I hurt all over my body every day without medication, and the pain never completely goes away. I've gotten immune to the medication dosage I take. I have neurophothy in my hands, arms, feet, and legs. I have neck, shoulder, and back pain. The back pain moves from place to place. I know I have fibromyalgia and arthritis, but this fatigue is keeping me from doing ANYTHING. I can't shop, play with my grandchildren, put my makeup on, do housework. My dirty clothes stay piled up, and I just can't get anything done. Is there help for me?
I get so disgusted because I stay chronically fatigued, and have to stay home all the time!!!!!!
Sarah Ruth Burke
The fatigue of fibromyalgia can be overwhelming. In fact, many people say it's worse than the pain because it interferes with your life so much.
A large part of the fatigue probably comes from the fact that most people with FM do not get quality, refreshing sleep. So addressing any sleep problems would be a good place to start. You might want to consider having a sleep study done to see if you have any problems like sleep apnea that can be treated. They should also be able to help you with tips and/or medications to help improve your sleep. Check out MySleepCentral.com for more information about improving your sleep.
If fatigue is a serious problem, you might ask your doctor if Provigil (modafinil) or Dexedrine ER would be appropriate for you. They can be quite helpful at increasing energy levels, however, if you have heart problems, you cannot take them.
Here are some additional tips to help you manage your energy: "Learning to Manage Your Energy"
No I have the same problem with pain all over my body. The reason we can't sleep at night is because you lay on your side and the pain hurts so much it wakes you up and you have to over in agony. The you lay on your back and again you have turn over in agony. I has nothing to do with sleep disorder. And it's not fatigue. I try my to do dishes and cook but my hands hurt so much I have to take my time doing it. So you have to sit around thinking should I or should I . It's not that we are tired it's that you have to think about it so much. Even relaxing on a chair is painful because your bottom hurts. My doctor has done the same things that all these other people have had done. Still can't find the answer. It's impossible to enjoy life.
I too have all over pain. Mine started as carpal tunnel to my left hand. It turned out that it wasn't carpal tunnel because they sent me to hand therapy, and instead of getting better it got worse, it moved up my arm to my shoulder - neck. This is a burning, stinging feeling. Now it is all over my body. I didn't mention the numbness feeling. I have had all tests possible and everything comes back fine. They did a ganglion stellate block to my neck and I got great relief and then it cam back ten fold. Dr. said I have complex regional pain syndrome type 1 also known as RSD. This has been going on for a year and a half, it has turned my life upside down. My pain is constant, never goes away. I continue to get new symptoms, electrical shocks to my face, feels like cold water running down my arm, or my leg at times. My feet feel as though someone took a bat to them. I can't work anymore. I can't sit for more than 15 min. at a time. I can't do house work, dishes, everything hurts and causes more pain. I am only 53 years old, I cry everyday because I am so sad that I may never get better and I will have to live like this forever. I have a husband, 2 children, and 2 grandchildren that I can't play with, hold, its a living hell. I pray that you too will find peace and some joy in your life. I pray for all that are suffering with excrutiating pain. God Bless you all.
I started having pain in both arms, shoulders, hips, legs (especially thigh pain), I had a physical two months ago but only my left hip hurt then, now have all the limbs as stated above. Saw the doctor today, more blood work, bone scans and density testing, fatigue, depression, and fear, pain is hard to deal with. I also lost 1inch in my height and I am only 49 years old. I tried Tylenol, Aspirin, Motrin, and Alleve nothing is working. At first the pain was just at night, but now it is all day and night, I am very scared that sometime more sinister than Fibromyalgia, Arthritis of Osteoporosis is going on. I saw your post and totally understand, it is difficult and scary to get through the days, you just want to feel good again, I don't want to cry, but it is difficult to not cry and not to panic. I will not get that 1 inch back, hope I don't lose more height and want the pain to stop. I hope you will find relief and be able to enjoy your grandchildren, as for me I am still raising a 13 year old (other children are adults), I work full time and commute but don't know how long I will be able to keep this up. I have not shared the total pain with too many people, just my sister (but I down play it so she won't worry) and one of my friends, husband does not understand, pretty much everyone is "you will be fine, stop worrying", but pain is such a difficult thing to not worry about interferes with your thought process with the ability to enjoy life and have a good nights rest (impossible unless I take an Ambien, even then I wake up after a few hours because of the pain). I hope you find relief, I hope I too find relief and peace of mind soon. We should all pray for ourselves and others, God bless you too?
Mary, I have to believe that we are two peas in a pod. I feel exactly like u and am @ to go crazy with this living nightmare. Have you come up with anything? I am just miserable with pain in every part of my body. I mean it is day in and day out. I hurt anywhere u can imagine and I bet u feel the same way.
What are we going to do @ it? SOmething has to be done...we can't go on living like this. THis is not life.
I had a surgery done in '06 and ever since then I have continually progressed to all of this. I have two boys, one 12 and the other18 and I know how it feels not to hold them and them not be able to touch u for it causing pain.
Please, if anyone can help us WE NEED HELP.... Karen
i was reading all these stories and have the same pains..yours hit a note with me. i also had surgery about 5 years ago..these pains began about a year later and progressed..i have tried different medications under my doctors care nothing works for me either.. i'm now on savella, it's a drug for fibromyalga..it's been 6 days and i feel nothing. i'm wondering if the surgery triggered something. let me know if you find anything that helps you.
I have a 16 yr old daughter she hurts everyday. Someone can barely touch her and she yells. She had a cardiac cath when she was 8 months old. Just within the last yr shes been diagnosed with mitro valve regurgitation and chiari malformation, shes also had very bad migraines since she was 5. The neuro dr put her on ultram for pain. It helps somewhat, but it does't take the pain away completely. If anyone has an idea of what it could be please let me know. I really want my daughter to be out of pain as well as know what the problem is.
Thank you so much!
I wish you and your daughter all the best and I hope you find a diagnosis soon. Here is a synopsis I went through and maybe an option to check out for your daughter. I used to be in pain all the time. I self diagnosed celiac disease 14 years ago since the doctors didn't know and kept saying it was anxiety. I now am pain free other than scoliosis pain probably resulting from the malnutrition from the gluten reaction. I did not have diareah or the typical symptoms of celiac. I had headaches and body aches and nightmares. All stopped when I stopped eating gluten. I am so sorry that your daughter is in such pain, I know how it is. I was in pain for 34 years. I am now 48 years old and gluten free and have a good pain free life. If your daughter has celiac, the easiest way to check is to stop eating all gluten for about 2 days and see if there is improvement. I have read that the doctors tests are not always conclusive. I have never done them. For me the improvement was within 24 hours.
I'm so sorry to hear that your daughter is in so much pain. I know how hard it is to see your child suffering.
Chiari malformation is sometimes linked to fibromyalgia. Fibromyalgia causes body-wide pain and can result in the type of hypersensitivity you describe in your daughter. Dr. Lasich, one of our experts, just wrote an article about this type of over-sensitization: Nervous System Sensitization
Here is a link to lots of information on fibromyalgia: Fibromyalgia
The National Fibromyalgia Research Association has done quite a bit of research into the chiari malformation – fibromyalgia connection. Here is a link to their Web site: NFRA
If you have any other questions, please feel free to send me a private message. Just click on my name above which will take you to my profile; then click on "Send message." – Karen
my name is Kathy, and I too have chronic pain all the time, from head to toe, dont have the answers, all the tests that are taken come back normal, i have neuropathy from chemo, I was diagnosed with stage 2 rectal cancer in 2007, I am in remission, but the neuropathy is so painful, and it doesnt go away, I believe it was from the treatment I had, it was pretty intense, I am alone, my children are grown, but I have grandchildren i can barely play with and do fun things with anymore, the fatigue is overwhelming and very depressing, I can't imagine having little children to take care of, my heart goes out to all of you, I dont understand, it is unfortunate that we have to plan and pace everything we do. I am still working but with great difficulty, dont know how much longer I can do it. I too pray to all who are suffering from these insidious syndromes and conditions, nothing is worse then not knowing why we are in so much pain, and there seems to be no relief in sight, the doctors are baffled and can only recommend therapy or prescribed pain meds, that only mask the problem.
I've always had some pain, mostly in the winter, but 10 months ago I started having a burning pain in my right foot and my winter pain did not decrease as usual and has excelated since. Now I'm having burning pain. like my blood all over is on fire but my skin is cold. I went to the doctor and because I don't have insurance, she started with a good liquid vitimine/mineral suppliment, and magnesium plus and olimitation diet that included staying off gluten and dairy products. The tests I need cost alot and she is trying to rule out some of them with the diet. I have found that I'm reactive to gluten products, tomatoes and milk. But my pain is just as bad, so that's not it totally. She mentioned MS, Chrones Disease, fibro, thyroid antibodies or RA. Mu fingers are very tender and I have tenderspots at all my joints. I have had significant hearing and sight loss in the last year. I'm a single mom (49) and still have 3 teenagers at home. Not sure what to do. I'm just trying to eat right, stay exercized as possible, and am trusting and leaning on God. God Bless you. I think often of Charles Naylor who wrote so many beautiful hymns while he was wracked with pain in the later part of his life.
So sorry for you and your daughter. I want to share what I go through and what has helped me. I still hurt daily but its at least easier to deal with at times. I too Have a cardiac cath and I have had migraine syndrome for about 4 years now. Sometimes I can't even get out of bed for a full day, I tried the injections at the dr.s office and many medications. I found that Topamax 25mg tablets works better for me when i take 3 tablets at bedtime. It has helped control my migraines, I may have 2 migraines a week compared to 2 a day! Plus Topamax really helps me sleep, which has been hard to acheive because of so much pain. I recently went to see a rheumatologist and she prescribed me cymbalta for my fibromyalgia and gabapentin for the neuropathy. I do have better days and I pray your daughter will too!
Hi all, my name is Estelle and I just have to tell my story. 5 years ago I was attacked real bad and had lots of plates put in face and jaw etc. a few months later my hands were numb on waking - this eventually turned to pain also, not just numb. My doc sent me for neck x-ray and was found to have CS cervical spondylosis. My doc said this was prob why my hands were like this and there was nothing could really be done apart from physio. This didn't help at all. Then my arms started to hurt, then my legs; my feet my knees - everywhere! I have since had 1 blood test; 1 MRI (just of the neck area) and a nerve conduction that showed up severe carpal tunnel syndrome. I was booked in for op with hand doctor but when I arrived he asked me if I could move my thumb. Because I could, he claimed that he did not think it was CT so sent me back to my own doc claiming that he thought it was trapped nerve due to the CS. My own doc thinks he's crazy but sent me to muscular skeletal to see what he thinks. He told me it is fibro as we have exhausted all other possibilities but I have only really had a blood test and MRI, plus nerve conduction that came back positive so I don't believe that all other possibilities have been exhausted. I am now told I just need to live with the pain; I am devastated. Please help me someone and I am sorry to hear of all your pain; it just isn't fair and I pray that we all find a cure.
sitting here reading your "pain" and everything you said fits me to a "T". what are u going to do? I to will be 52 next month and the last 4 years have been hell. I was soooo outgoing and the life of the party, now not much. there just has to be help!
you may have parasitic disease it may be cause by fresh water like lakes river flood. so if you renumber walk in flood water or swiming or you went to swim in a river or a like who is now that it have parasitic
just started tacking vitamin d 2000international unit a day.Iam finally felling good again.
Hi Mary Im Greta, and im 55 my mother and I both have this fb /cfs. Im in constant pain everyday, and seems to be moving right through my entire body, I feel its going to kill me, lately Ive just been wanting to go to sleep and never wake up, I dont want to die, but I think about ending it because I can't bear the pain an longer, and the depression it causes me. Ive been diagnosed with fb. I had to give up work 18 months ago. I get excruciating headaches and head pain alot of the time, what is also horrid is that my family members dont understand, because I look fine. They just tell me "I feel sorry for myself" and Im a drama queen. IM still getting periods at my age they wont go away and Im starting to wonder if its because of this chronic illness. This makes it worse hormones are all over the place I have 2 cracked verterbrae in my lower back and a disc pressing on my spinal chord. Anything else we might have wrong with us seems to increase the pain and suffering of this fb/cfs. I can't exercise any more its too painful, and so Ive gained weight. All the symptoms you have I have and I know too well what its like to wake up every morning after a painful night in bed still feeling like Ive been in the boxing ring with Rocky Balboa. Not to mention the dizziness along with the unbearable fatigue, its driving me insane and it does start to affect your thinking. So when anyone asks me how I am now I say "Im good fine couldn't be better, because I just get labelled as a whinger otherwise.Its nice to be able to share this here without being called names and told to get out more, and get a life. Im trying to get a life, and its not easy is it? Thankyou for letting me share this with you Mary and everyone too, love and hugs to you all. Greta :)
I was just surfing the net. Fortunetly I have a lap top so I can read all the post but it does make me feel better just knowing that I am not losing my mind. I've been told that its all in my head, you can't be hurting everyday and like you unless you've been here you are hueless. I started out with knee pain after 5 different surgery's the pain is still there but worse now because of the limp and that makes my hip and back hurt. NOBODY understands unless you have these problems. I too don't look like there is anything wrong with me,so I just tell people that I'm fine when asked . It just feels good to be able to vent to someone that understands Because you have no life when you are in pain everyday of your life..I tell my friends that care its like having cancer and you're just waiting to die. My prayers go out to all of you reading this and to all of us in pain.
I think it is very interesting that most of us who are having this pain are suddenly being vitamin D defficient!!! Interesting, very very interesting. My vitamin D count was 15 and I was put on a mega dose of vitamin D for about a month...I thought I was feeling better but that only lasted about 2 days or so...It didn't last....I am soooooooooooo glad that you are feeling better...I hope that it stays that way for you! In the meantime, we will just have to keep going for 2nd, 3rd and 4th opinions until we run into a doctor who knows something about this condition we all seem to be having....
I too have pain all over my body since I had my total hip replacement back in October 2010. I have never felt this way and seem to think it's related to my surgery. I'm only 61 and have been active most of my life. This pain is radiating in my hands, wrists, chest, feet and anywhere else it could find a spot. It's getting riduculous with all tests coming out okay. I just had blood work for rheumatoid arthritis, and today a visit to my GP will tell the story. I don't think he'll find anything out. It may be one of those mystery diseases that only a specialists could diagnose. I will try getting off of all white processed foods and hope this is the cause. I was beginning to blame the move from the Northeast to Florida and change of climate. But really, there is something going on inside. I will get to the bottom of it soon. I wish everyone well and finding out the cause. Did those people above have invasive surgery lately or before that may have something to do with the pain???
Hi Estelle, Try going to a GOOD pain management doctor. He may be able to help you. If my GP doesn't come up with something substantial today, this will be my next move. I have the same symptoms that everyone else above has and hoping to get to the bottom of it soon. Sometimes I think I'm going crazy and that it's stress. Well, it's not stress, there is something going on in our bodies that we need to deal with. Good luck.
you're a wonderful mom. the fact that you believe your daughter really helps her. I know because I am in pain daily. every since my car accident six years ago my pain had gotten worse and worse. I had to leave work today due to pain and drowsiness from lyrica. it really hurts when others dont believe you. when you have to keep it inside and just say "im good" instead of saying how you really feel. Im like someone else who said all she want to do is sleep. thats how I feel, alot. right now im feeling like needles are being poked or stabbing pains throughout my body. from head to toe. Then Im afraid to take all of this medicine because i dont want to damage my organs. I have to work tomorrow. do i go and deal with the pain or take my medicine and be drowsy at work. Im a cop and I deal with this along with the politics of my job. NO ONE BELIEVES YOUR HURTING on this job. you're criticized and rumors spread. not a good feeling. so im so glad you believe your daughter. thats half the battle when you're not alone, therefore less depressed. Kim
I am just responding... I could have wrote the same notes.. It is not that I can not sleep, I want to sleep but the pain is so great I can not .. And if I do it is only for a very short time before I are awaken with pain.. I cry myself to sleep most nights.. I know taking Ibprofin is not the answer day after day every 4 to 6 hours .. and it only maybe takes the edge off.. I sit like you said and that only hurts, simple house hold task area enormous.. I am a designer and seamstress.. I have deadlines to meet.. I have missed my first one for this year.. because I can not lift a bolt of fabric, or reach to the top of a shelf. oh not to mention the action of the laying out the fabric on the table and cutting it. Hurts! Yes you do think about every action every movement. and you can feel the pain before you even do the action. I am only 51 is this what is left of my life.. I am gaining weight because of the lack of activity.. I can not even stir cake batter or make cookies for the grandkids.. I have a hand mixer but that is too heavy.. the coffee pot too... I feel worthless to say the least.. I just want to understand what is going on and if there is any hope at all.. This is so scary..
I just read about post surgery neuropathy. Perhaps this is what you are experiencing. It is treated by immunotherapy according to the article I was reading. Search online and see if perhaps this fits your situation.
Perhaps you are experience post surgery neuropathy. I was just reading an article about it while researching my own pain issues. It stated that it is treated with immunotherapy. Do some online searches and see if this could fit your situation. Good luck to you.
i also tried savella..it didn.t help me at all... some of the drugs i've tried left me with a shortness of breath...i'm try ing some herbs now if it works i'll let you know. if you like to corespond further my e-mail is firstname.lastname@example.org
be very careful using ultram....my son got addicted to it and when he stop taking it he had a sezure so servere he arm got dislocated from the shoulder...that's a bad drug. my son was taking to much of it of cause.
I can relate to your experience. I'm 48 years old but feel like I'm 70. I have been told by my doctor that I have RA but I'm beginning to think it's got to be something more (I hope not) but the pain is just most times ridiculious!! I'm trying to brace myself to "accept" whatever medical news I get once I get tested and they come up with a possible answer. I to, have been holding off from telling anyone about my constant pain. I don't want to worry my two grown sons and as far as everyone else I don't even think they'd really care anyway. I have a 21 month old grandson. He's such a joy to my life, but I can't enjoy him like I'd really like to because of this condition and I know there will more to come. I don't want to be the wheelchair bound grandmother at age 53 or 55! I think my condition came about because of stress and overuse (work) of my body. I was stuck on the constant "above and beyond" mode combined with stress, and raising two kids alone!! And that's just the tip of the iceberg! Now I guess it's all just caught up with me and this is how it has manifested itself. I'm not happy about it, but I know bottom line it was decisions I made that triggered all this crap!! Now I don't know if its to late to "reverse" it. Not sure, or maybe the good Lord may just see fit to "heal" me of this awful ailment. Now that would really be nice! I'd be forever grateful :) Let's keep praying. God is able to do above and beyond all that we ask or think. And yes, I know about the the troublesome sleep. I go thru the same thing. Tossing and turning from left side to right, to the back and sometimes on the stomach! Constant burning pain no matter how much you change position. Well God bless you to my sister, and my He grant you healing from this horrible ailment that I share as well. Be strong and keep your head up!! bye.
Wow thats exactly how I am except my fingers are still all right at the moment you lie on your side but hip and shoulder forces you back over you lie on your back and both hips hurt my bottom hurts like crazy. Putting knickers and socks on is near impossible. I just feel my life is over and I have only been suffering for 6 weeks !!
I was diagnosed with fibromyalgia about 14 yrs ago. I have had surgery on my neck shoulder knee and foot because of arthritus and nerve pain. A few years ago my primary care doctor mentioned that my calcium level in my blood was elevated and told me to knock off eating too much calcium rich food, so I did. About 2 yrs ago my doctor ( in a new state ) also mentioned my calcium level was elevated and sent me to an endocronologist, she scanned my parathyroide glands and did not see anything. Well now it is two years later and a new primary doc, who also sent a letter saying calcium was elevated. Well I got on the internet and checked this out for myself and find that all the pain and symptoms I've been suffering for years my be caused from my calcium levels. I went back to my doc and insisted on more extensive bloodwork to check for parathyroid desease.It came out high again along with hormone levels that fell in a normal range, but not for higher calcium. I took the results myself back to the endocronologist and said what should we do. I am schedualed to have parathyroide surgery the 4th of May in florida, where they perform 14,000 of these a year for people from all ove the world. Apparently this is rare and takes years to dignose and not many Dr see it. Hopefully I will feel a lot better after this and I will let you all know. When the Dr in Florida reviewed my records and called my, he just said " you do not have fibromyalgia" now would that be wonderful !
Yes, it would be great if you don't have fibromyalgia! Good for you for standing up for yourself and insisting on more tests. I wish you the best with your surgery and can't wait to hear your results.
To All of you who feel so much pain and have been diagnosed with Fibro and arthritis of some kind, here are some directions and help.
I suffer from the same thing for many many years:
1) Good night sleep is very important. I have been taking Apo-Amitriptyline Hcl 10 mg, half hour before I go to bed. It really helps me to sleep well. When I have a very stressful and painful day, then I take 2 pills which is 2 mgs.
2) Sitting under the sun is very important. When I go away to a sunny place in the winter, I do not have pain at all. I am totally a new person. I know it is very difficult to sit in the sun during our winter season, so take Vitamine D 2000 mg a day, one in the morning and one at night.
3) Go to Bulk Barn store, or any other store that sells Gluten free products. Also, Stay away from any wheat products.
4) When you wake up, juice 2 carrots, one beet and a little bit of lemon and drink it on empty stomach. Do not eat or drink anything else for one hour.
5) Stay away from meats, specially the processed ones. Rely on beans, tofu, nuts, vegies, and fruits. You can grill a lot of vegies, put in a bowl, add any kind of beans, add some cucumbers, red onion, etc, do your own salad dressing with olive oil, lemon, cumin, tumeric, toss well and eat. It is amazing.
6) When I go through days with no energy, then I give myself vitamine B12 shot, a nurse came in my house and showed me how to do it.
I just turned 65 yrs old and I know what all of you are going through.
Please spend time with Jesus and pray each day. Ask the pastor and the elders of the church to annoint you with holy water and pray for you. It really helps a lot.
Hope all of the above helps.
It is Norma again, and I have to say my body is changing since my parathyroid surgery. I am a little shaky but doing better every day, The one thing I noticed is that the burning stinging pain I have had for years in my neck and shoulders is going away. I also had foot surgery last Sept and my foot swelled up alot just after walking during the day. The swelling seems to be improving and going down quite a bit now. My sleep is still terrible thou and I'm hoping this will improve over time. I will let you know.
Hope others can get help and answers soon, living with constant pain is horrible.
Please let me know how you do with your parathyroid surgery. I was diagnosed with parathyroid disease and when I went to get the surgery, the PTH was normal on the day of surgery and they sent me home. Now it's 8 months later and my parathyroid hormone is high again. I am going back to the doctor on 9/6/11.
I suffer from uncontrollable blood pressure, headaches, depression, anxiety, and insomnia. They also tell me I have fibromyalgia.
I hope and pray that you feel better after your parathyroid surgery. Please let me know if some of your pain is gone and if you feel better. I pray that you do.
i am exausted and have had sleep studies done, however it had nothing to do with sleep apnoea or anything like that, it was and still is due to the amount of pain i am in i cant lay on my back it hurts, my side it hurts, then i have to sit up as my legs start to hurt then i have to lie down again as my back hurts, i bought a new bed to the tune of 2000 pounds it hasnt helped, yes sleeping pills do give me a good nights sleep, but what doctor will prescribe them permanently? and then because of no sleep at night i am exausted all day but cant sleep then either as i am in pain, it is a never ending circle and it makes me so frustrated, i am a head chef by trade and now i cant even peel a potato, doctors dont realy want to know, we dont need sleep studies we need to be helpedand understood.
I will be praying for you.
I too am a single mom, raising 2 kids by myself, with chronic pain for about 10 years now and I am only 39! I just had to respond to your post because it fits my situation to a T. I have an 18 yr old a 10 yr old daughter, who is very active and hyper and demanding, and a 3 yr old niece who I adore but can't enjoy as much as I'd like! I feel SO old and tired, tired psyically and mentally!! I too have a strong faith but can't understand why God is allowing THIS to be my life. I have been divorced from an abusive relationship for 8 yrs now. I quit smoking and drinking a LONG time ago. I hardley ever date. Depressed alot and on medication but try and exercise and eat healthy...sometimes! I just feel like I have struggled all my life and just want to live pain free, really? is that so much to ask after all? It hurts to sit too long, it hurts to stand too long, it hurts to sleep, read, sit in church, choir, the movies, car trips are a NIGHTMARE and I have become a bad housekeeper because I just don't feel like doing ANYTHING!!! I try not to get crabby and down in the dumps but it is SO hard. I would give up ever getting remarried, being successful, finacially stable, and alot of other things just to live pain free. I also have been to many doctors and have gotten no where! No one seems to know what they're doing or even care. I know I have arthritis, maybe fibro, bone degeneration, etc. but no medications help anyway. Guess I just needed to talk...sorry for rambling! God Bless
I to have pain all over my body i have had a total hip replacement also july 26, 2010, i never have just felt so run down totaly exhausted all the time i hurt severly all over my body down both legs, feet burn i can hardly walk even in the house to do house work minimum i have to set down, and then get back up and try again to get up in a few to complete my chores, i get so tired of saying i feel terrible,and i know my husband gets tired of hearing it also... i wonder now if it is related to the surgery also being i heard this from your discussion it makes me wonder what a miserable feeling and very depressing i have always been so hyper and energetic. please reply, i am only 56 years old... i has a very good healing proccess after the surgery, and felt better 4 months after then i do now.... i also feel anxious inside i guess because of this stressfulness of not feeling like its never gona get better...i pray God please help me and i know he can one day it will be ok, only because i dont want to give up.. please reply to (july26,2010hipreplacement)
vitamin D is a essential vitiman and under estimated.
vitamin D is part of a triligy, and should be taken with calcium and magnesium.
Vit D + Calc blend tablets usually do not have enough vit D and is an expensive calc tab. Check what is actually in the tabs. About 1,000UI Vit D is required for people who do not get a good chunck of the day of direct sunlight - this includes office workers! In Aust there is a vit D deficiency, not because of the lack of sunlight, but the over use of sun-block. Vit D is not the cheapest vitamin, but one of the most essentials, but do not waste it as it needs magnesium and calcium for it to be metabalised effeciently.
People of darker coloured skin need more sunlight to get their equilivant as a fair skinned person, however a fair skinned person needs to be mindful of easier sunburn.
Hope this helps.
thanks for writing. last night i began to think death was an option. i know that's not rational, but this is so rediculas I don't even have words. I have pain every day, but in the last two weeks even my medicine doesn't take the edge off. i'm exhausted in this battle. work is piling up. i can't even make a dent. i try to be nice to people, but still i have to plan NOT to have contact. i'm sick of saying I'm sorry.
I am a 54 year old woman who "suddenly" began feeling achy all over about 6 years ago. Now, I have weakness when I walk. I cant believe this is happening to me! I too was a very happy, funny gal. Now, I struggle to keep my anger together. This pain, sometimes is SO bad, I cry. Then, I can go for weeks feeling normal. Then it comes back 3-fold. BAD! I dont by the Fybro. It has to be studied more.
HI THERE my name is connie ,,, im a male living in ireland , ive been living with severe aches and pains all over my body on and off for 11 years ,, i sleep sound all night but when i wake up its like i was in a battle all night ,,,, id love to chat more to you about our similar conditions , i notice its a year since you put up your post so im wondering if you have got better or worse ,,,,, my email is email@example.com or if your on face book request friendship and ill add you , my face book name is connie cronin in cork ireland , im wearing a black shirt in profile pic ,,,,,,, hope to hear from you soon ,,,, connie
Just remember that vitamin D is a fat soluable vitamin and is one of the few vitamins that you can overdose on so ask your doctor to do a blood level, hope this is helpful.
You are right, you can overdose on vitimin D/D3, however a daily dose of 1,000micrograms is quite safe. It is extremely difficult to OD on vitimin D, it is a little like suggesting an OD on water, it is theoreticly possible, but unless excessive consumption, vitimin D is necessary to help with the metabolism of Calcium, hense the triligy of vitimin D, calcium and magnesium for maximum metabolism and benefit.
Pathology is the only way to know if there is a vitimin D deficiency, however it is very easy to be deficient, but not low enough for the pathologist as the blood levels have to be very low to be able to be detected.
Small ocean fish which live close to the surface are about the only edible form of vitimin D, but sunlight is needed to convert it into a metabolisable form, and it takes a daily consumption of a lot of fresh mackeral or sardiens (not fish oil capsules) to eat enough vitiman D.
Vitimin D deficiency is one of the most overlooked, easily diagnosable, and 'fixable' problems of many symptoms. It might mot be the ONLY problem, but it is better to 'fix' than discount or completely overlook.
20 minutes of exposure (without sunscrean/sunblock/tanning oil on the skin) to sunlight each day is also a way of getting adequate vitimin D (the problem with this is that sunlight is needed and it be warm enough to expose the skin without being frozen!)
Hi Marley, My Neurologist checked my boyfriends vit D level and it was very low so she put him on a mega dose once a week for a month then an over the counter vit D daily after that, she is going to be rechecking his blood this month. Our neurologist has also but us on Folic Acid and vit B 1 and injectable B 12. I have read the research about the link between folic acid levels and b12 on nerve pain, if your levels are low or on the low side of normal the study recommended supplements, with the B vit you can not OD as it is water soluble and what the body does not need you will just eliminate through waste. Hope this helps some of you, stay strong. Regards Mimi
Same thing with me...I have FM...trigeminal myalgia...one doc said RSD...not real sure...I was so tired in the morning...couldn't get out of bed...feeling so foggy...joint & mussle pain so bad I could hardly walk. Found I was depleted in Vit D so I'm wondering why can't our bodies retain Vit D? and Lyrica...now it doesn't hurt so much to be touched
Sweetheart, don't ever be sorry for ramblingling!! People like Us that live in chronic pain every day of there lives need to talk about it....& need someone 2 actually listen!! I am so Sorry to hear how badly ur hurting, but i an tell u without a doubt i know how u feel! I have fibro and was just told this week by my rheumatologist that i have a great deal a new EXTREME PROGRESSION of my illness....things that i didn't even know happen from fibro (more on that later) Back in 2007 my spine start 2 deteriorate....very rapidly! Set 07 I had my 1st back surgery and sine then I have had other back surgeries, 2 cervial(neck)Surgeries and I had to have both of my hips resurfased....whih is AGONIZING & the recovery from that vs a total hip replaement is abou times5.....I was a omplete fool and not know how muh more intense it would be i had my his done 6 wks apart...i was not able even 2 attempt 2 stand up for 5 months. Lean on the Lord Lord girl..He does love u! Keep FAITH....Mine keeps me goin'...i swear it does. U can't live in that kinda pain darlin n have no support systen or anyone to talk to....u need it! not sure if u have anyone to do that with??? but im always here if u wanna talk or dissuss anything......one more thin I think u need to get ur butt to a good Rheumatologist asap....where u live?....start lookin for one
ok.oops....made a ouple mistakes in my reply to u, bear with me ...that is the progreesion of the brain fog! aalso...it was suppose to say that i had 4 back surguries....God Bless Ya Babydoll ;)
I, too, have been living with pain all over for several years now. I have never been to a doctor about it, as I do not like to put my health and well being in the hands of drug dealers. A few years back I tore the cartilidge in my ankle due to a bone spur, and the doctor told me the X-ray and MRI showed I have rheumatoid arthritis. Going with what information I have, I prefer to research and self diagnose because nobody knows what is going on with me better than I do. I found a definite link between my coffee consumption/addiction and my aching body. From what I have read, caffeine depletes calcium which in turn can cause imbalances in it's helper vitamins D and magnesium. Not to mention disrupting sleep. I found great relief in reducing my caffeine intake to a one cup of weak coffee a day, eating a healthy diet and taking a high quality multi-vitamin. I take a daily vitamin packet that includes extra calcium and vitamin C, ginseng and fish oil supplements. I don't know if any of the rest of you love your caffeine, but I know that it can cause many imbalances in the body that range from arthritis to thyroid problems to kidney problems. Your body is a whole working unit and symtoms can be different for everybody. If you are not treating your body the best you can, chances are it is going to start to fail you at some point in time. I am only 31 and I was feeling 81. I am just starting to get my life back from chronic pain. I hope this helps some of you.
TODAY'S young people have been born into a cruel world. Tragic earthquakes and natural disasters that snuff out the lives of thousands seem to be commonplace. Wars and terrorist attacks dominate the news. Sickness, disease, crime, and accidents rob us of loved ones. For Mary, quoted above, evil hit close to home. Her bitter words were uttered after the death of her father.
When tragedy touches us personally, it is only human to feel frustration, loss, or even anger. 'Why did this have to happen?' you may wonder. 'Why me?' or 'Why now?' Such questions deserve satisfying answers. But to get the right answers, we must go to the right source. Granted, as a youth named Turrell observed, sometimes people are "hurting too much to think things through." So you may need to find a way to calm your emotions a bit so that you can think—logically and rationally.
Facing Unpleasant Realities
It may be unpleasant to contemplate, but death and suffering are facts of life. Job put it well when he said: "Man, born of woman, is short-lived and glutted with agitation."—Job 14:1.
The Bible promises a new world in which "righteousness is to dwell." (2 Peter 3:13; Revelation 21:3, 4) Before those ideal conditions are realized, however, mankind must go through a time of unprecedented wickedness. "Know this," says the Bible, "in the last days critical times hard to deal with will be here."—2 Timothy 3:1.
How long will these difficult times last? Jesus' disciples asked more or less the same question. But Jesus did not give them a specific day or hour when this misery-stricken system of things would end. Instead, Jesus said: "He that has endured to the end is the one that will be saved." (Matthew 24:3, 13) Jesus' words encourage us to take a long-range view. We must be prepared to endure many unpleasant situations before the end finally comes.
Is God to Blame?
Does it makes sense, then, to be angry with God because he permits suffering? Not when you consider that God has promised to end all suffering. Nor does it make sense to feel that God causes bad things to happen. Many tragic happenings are simply the result of random events. Imagine, for example, that the wind blows a tree down and it injures someone. People may call this an act of God. But God did not make that tree fall down. The Bible helps us to appreciate that such things are simply the sad result of "time and unforeseen occurrence."—Ecclesiastes 9:11.
Suffering may also stem from poor judgment. Suppose a group of youths indulge in alcoholic beverages and then go for a drive. A serious accident results. Who is to blame? God? No, they have reaped the consequences of their poor judgment.—Galatians 6:7.
'But isn't God powerful enough to end suffering now?' you may ask. Some faithful men in Bible times wondered about that. The prophet Habakkuk asked God: "Why is it that you look on those dealing treacherously, that you keep silent when someone wicked swallows up someone more righteous than he is?" However, Habakkuk did not jump to hasty conclusions. He said: "I shall keep watch, to see what he will speak by me." Later, God assured him that at an "appointed time," He would end suffering. (Habakkuk 1:13; 2:1-3) We must therefore be patient, waiting for God to end wickedness at his appointed time.
Avoid jumping to the rash conclusion that God somehow wants us to suffer or that he is personally testing us. It is true that suffering can bring out the best in us and that the Bible says that the trials God allows can refine our faith. (Hebrews 5:8; 1 Peter 1:7) Indeed, many people who undergo trialsome or traumatic experiences do become more patient or compassionate. But we should not conclude that their suffering was God's doing. Such thinking does not take God's love and wisdom into account. The Bible plainly states: "When under trial, let no one say: 'I am being tried by God.' For with evil things God cannot be tried nor does he himself try anyone." On the contrary, from God comes "every good gift and every perfect present"!—James 1:13, 17.
I am sitting here crying as I read your post. I feel exactly as you do. I am so extremely depressed all the time. I have been diagnosed with Lupus, RA, Fibromyalgia, and IBS. I am in pain everyday, some days more than others. Migranes off and on, tired all the time. Dizzy spells, memory loss, etc. Today its cold and rainy out, and my whole body is burning and hurting. My hands especially today. I work full time(well lately I've had to miss a lot of work as my flare ups are getting worse). I have 3 children and husband. They don't quite understand. Neither do the people at my work. People say, why have you been off, you don't look sick? Or when I tell my husband that I just want to go to sleep and not wake up, he thinks its a reflection on our relationship. I try to explain it has nothing to do with him or the kids. I love all of them very much and I don't want to be without them. They make me happy, but I can't take this pain anymore. I have been dealing with this the last 10 years and it is only getting worse, and I'm only 39! I just want to feel like my old self. I think that I have come to the realization that I won't ever feel like my old self, and that this is going to be my life, and I just can't take it. God Bless all of you.
Jeff I think you stated your response beautifully. I, too, suffer from chronic awful body pain in most of my joints as well as having painful feet, hands and back. I've had cancer, diabetes and several other conditions that have plagued me, but I will not blame God for them. God's own son, Jesus suffered for all humanity, more than any human has or could ever suffer. We were never promised an easy, perfect, pain-free life. The only place we can anticipate that is Heaven. Faith helps us deal with life's difficulties and suffering. I lost my parents, my best friend (just weeks ago) and I had four miscarriages when I wanted nothing more than to have another baby. God carried me through the most devastating of times. My physical pain is likely due to my own life choices in younger years...like extreme exercising and dieting, over use of antibiotics as a child, working in a building that was found (many years later) to have had high levels of radiation, and only God knows what else. We're are all often exposed to chemicals in our environments that can wreak havoc on our bodies, yet many others may have had no reaction to them. We are given free will, and with that, we make mistakes, and do things that can affect our long-term health, etc. I also believe that we are allowed to endure trials for reasons we will not know in this life. Either to be an example that will teach others, or to ultimately learn something ourselves. I hate being in pain all the time...but I'd rather live in pain with God in my life and the promise of Heaven, than feel good physically and be separated from God. In the meantime, I try to take good care of myself and do whatever else I can to help relieve the pain, like occasionally getting accupuncture, massage therapy, taking hot baths, pain medication, juicing fresh vegetables, hot compresses and not pushing myself too hard when the pain and fatigue are too much. God Bless everyone dealing with pain, and comfort us in our times of difficulty, in Christ's name.
So sory to hear of your losses, Jesus Sufferd for us all yet nobody realizes and why, What hope is there for those who have died?
The Bible reveals that it is God’s purpose to restore the dead to life by means of a resurrection to a paradise earth, where sickness and death will be no more. Jesus said: “The hour is coming in which all those in the memorial tombs will hear his voice and come out.”—John 5:28, 29; Revelation 21:1-4.
When speaking of his recently deceased friend Lazarus, Jesus compared death to sleep. (John 11:11-13) Moreover, after Jesus resurrected him, Lazarus said nothing about having been in a place of torment or a place of bliss during the brief period of his death. (John 11:37-44) This is understandable, for the dead are unconscious. They do not experience suffering but await the “hour” in which they will be raised. In any event, the fact that Jesus resurrected Lazarus shows that the dead can live again. Indeed, by this miracle Jesus showed on a small scale what will take place on earth under the rule of God’s Kingdom. (Acts 24:15) What a comfort that is for those who lose their loved ones in death during this turbulent time!
Hi Geri and others who got no relief from savella. Have you tried cymbalta? It made a major difference for me for about a year. I'm still on it, as well as celebrex and hydrocodone, but for some reason, nothing seems to be working right now. I also used to take tumeric capsules but ran out and quit taking them a couple months ago. I realized this may be the difference in how bad I'm feeling right now, so I started taking it again yesterday and will continue to take up to 4 capsules per day. It's supposed to help with a lot of things, but a major one is inflammation. I hope that I can report back shortly that I'm feeling better. We'll see. I also take vitamin D. I hope this info. helps.
I can totally relate to what you are going thru...I have been suffering for years from such severe pain that at times I cannot walk and just recently has become 1000 times worse. I have been to the doctor and all tests come back normal, celebrex used to work wonders but quit about 3 weeks ago. I am a nurse, live alone, and male. Just been in the last week or so where I can't sleep due to the pain and even take Ambien. The pain has now begun to attack both my hands and all fingers as well as both feet and all toes with burning sensation all the time. I am embarressed to keep going to the dr don't want them to think that I am crazy which I am sure he does. The pain is actually becoming so unbearable I can't do hardly anything anymore. On my good days I use all my energy to catch up on all the chores that I have neglected then end up exhausted. I am at my wits end!!
Hang in there my friend. I found you because I just typed in "Why does my body hurt all over?" I am at the gym 5 times a week, and am very active, but lately even bending over feels like I am getting stung by thousands of hornets. Love your babies. Love your husband. Really concentrate on what "cherish" means. My daughter had fibromialgia, and left us all when she was 27. While she is out of pain, the rest of us carry it for her. I cannot make your hurt go away, but I hope by focusing on those that love you, it will diminish some of your pain. I am pretty scared, but when I found other people who ar eliving with this, it really helps.
I have the same much pain every day was told it is fibromyalgia. Had b12 & vit. D deficiancies. Thyroid trouble, etc. I found a dr who said bioidentical hormone replacement therapy has helped her fibro patients. I tried it & it got rid of my pain & fatigue for about 2 months! I thought I was cured. It slowly started coming back & is awful again, but still not as fatigued & even though pain is bad, I can remember back it was worse before I did this. It is all natural creams. It also helps if you have menopause symptoms like hot flashes. I was getting those bad at only 39 & I'm 41 now & don't get them anymore. It is worth looking into, it does help somewhat & maybe will help someone considerably out there!
I have bad pain when I get up in the morning specially my neck and my hand more often my right hand my waist and also my leg,the pain sometimes is too much that I would like to cry,I am 54 years old and male.
Thanks for your help
Hi Olive, yes, I did have 2 invasive surgeries within 5 months apart. I had a triple diskectomy in May & wound up having shoulder surgery because I was mishandled by someone in hospital right after surgery & they torn my rotator cuff. Then about 2 months after surgery my life became a living hell. I have been told by several people that they started having all over pain after having surgery, I did. I started to have such severe pain in so many areas of my body, the fatigue was unbelievable, I am 62 yrs old was always a very active person now I struggle to empty/load the dishwasher, laundry, making a bed, taking a shower ( had to get a chair for shower to sit on can't stand for very long) can't blow dry my hair without a chair now the pain is incredible. My GP diagnosised me with Fibromyalgia & but me on Savella, I had NO PAIN at all for a few months then one day, it all started again, so she changed it to Cymbalta, that did absolutely nothing, she did originally want me to take Lyrica but my insurance co. denied it. She doesn't know what else to do for me so she made me an appointment with a Rheumotologist on 4/30. Bedtime is the ultimate worse, I even stay up so late at night now until I am so tired just to avoid going to bed the pain during the night is so severe my husband hears me moaning all night, most of the time I don't even realize I'm doing it but as soon as I fall asleep the pain is so bad all over it wakes me up so of course I am not getting much sleep. This has turned my whole life upside down. I can't do anything anymore without suffering. Dr. keeps telling me moderate exercise is good for Fibro, exercise?? I can't barely move. I struggle to do any type of housework or anything for that matter. Just walking down the driveway to get the mail is so hard I come back in the house & I am in so much pain & so exhausted just from that little 2 min walk. We live in Florida, we recently took a trip to some places in the West Coast, I couldn't do alot of the things that involved alot of walking, to be honest I really couldn't enjoy myself because I was in so much pain & so exhausted all the time. I am not bad if I am sitting & but standing & lying down is a killer, but this is no way to live & feel like I am only existing now. If you have any suggestions on meds or anything could you please pass it along to me? My email address is firstname.lastname@example.org. I am deperate, depressed & have had just about enough of this & this so called life!! I pray that you find some relief with your pain, I understand & sypmpathize wih you & all of the others who are suffering with this awful pain. My name is Donna. God Bless You.
I am wondering if....in the months since you wrote your post you have found any relief from your pain and exhaustion?? I am praying you have, because from the sound of your post your in more pain than I, and believe me, I do not feel well. I too have a hard time with the energy to clean, market, cook ect..it does not seem possible that just two years ago I could hike uphill at 9000 ft. altitude and ski for hours at a time. I didn't have any surgery prior to the onset of all this pain & fatigue but I had taken a really bad fall and was also coping with the death of a grandchild, as well as the ensuing devastation to my daughters family. I can't help but wonder if both physical and emotional trauma might be part of the problem. I have been seeing a chronic disease doctor & I have high hopes of feeling better under his care. I will report back at the end of my three months with him. I will also keep all with terrible daily pain in my prayers and hope we all find some answers. Good luck, ansidpleh
hi my name is mary, i have fibromalgia,diabetes,osteo arthritis, i also have terrible body aches doing simple chores, my house is a mess. but i do what i can. what helps me deal with the pain, is i drink arnica tea, you can research it yourself, just type arnica its health benefits on your search bar in your computer and research it. arnica is a natural antiflamitory and great natural pain killer i also take R- alpha lipoic acid it is also a great pain killer. you can buy R-lipoic acid at wal=mart its around $8.00 for 100 capsules i take 3 a day for pain. you can buy arnica in any food for less grocery store or you can buy it from any mexican store. look for it where the mexican spices are. these items should not be taken if you are taking medication from a doctor. doctor medications have dangerous chemicals that hurt your organs in time. just take natural herbs or natural things like the ones i mention. remember research first and see if this is for you. i hope this information will help you just as it has help me to deal with pain. also when you take arnica use only a teaspoon in a cup of boiled distilled water. then add a tea bag of green tea and cover the cup so it can relese the tea then drink it when it is cool. arnica is very cheap it cost around $1.00 for a small bag. in acient times arnica was used to heal broken bones. isint that awesome.
I like what you have to say. We have to take control of our health rather than taking drugs our doctor could prescribe. I have been getting more and more aches and pains that are only getting worse and especially at night. I also have degeneration in my lower spine. I am going to try to eat healthier and make sure I take my vitamin D, magnesium etc. I recently have been drinking coffee more than before, but I love sugar too, and think there's a definite connection too. I hate feeling like I am so much older than my age. Time to take control.
I think i have the same problem. I stopped drinking and taking anti-depressants and now i have extreme pain all over. I'm afraid if the Dr does'nt find a solution soon i may go back to drinkning to kill the pain. I don't really want to do that.
hi, i have been in pain for over a week now, this is the first time this has happened in a long time, I was in numerous car accidents and i feel down a flight of steps two shoulder sugeries, and I need back surgery now, I am fifty nine years of age, i could not move for five days, house bound, the pain is from my neck down to my ankles. I am so sad, i am on vicotine, when I dont take it i suffer so i think I will just stay on it till this passes. I feel for all of you, the funny thing is when someone ask where do you hurt, and i cant say, because i hurt all over. my cat jumps on me and i want to cry, it hurts so bad, any way i think I am going to go out today because maybe I will feel better about my self thanks for listening
I also have Fibromyalgia and let me tell you, I don't sleep well but, the pain is far worse than the Fatigue. I recently went from 600mg. of Neurontin to 2400mg. It helps but I have to remember to take it on a schedule and stick to it. I am going to a pain management Dr. and he is VERY good. He also works with my sleep problems. I suggest you get a good pain management Dr. who will work not only with your pain but, your sleep problems as well.
Well just had to post I amm soonn to be 57. I have hurt and felt bad fo as long as I can remember. Been to neumerous Dr's who of course think I have emotional issues. That just makes me sick. I have always been active and continue to do so inspite of the consiquences. I never know what or when will trigger worse symtoms. Have had horrible leg and feet cramps for 25 years now. I am not low on calcium,pottasium, Vit d or b12 all labs come back good. I did finally found that taking flexirl when I feel leg cramps cominng on does help. It has seemed to make them less often and less severe. I also had severe sleep problems and tried everything. Well I got on bi polar med Seroquil I was perscribed 50mg I can't take that much cause it does knock me out. I cut up the small pill and take just small pieces first time I have ever had somewhat decent sleep. It does help me cope better but nothing really stops the over all un well feeling I have. I force myself to do things because it seems I walk a very fine line of under activity or over activity. I have twinges electrical shock feelings joint pain and swelling, stiffness. On bad days can hardly walk. but with some rest and slight inactivity it goes away. Just to come back. Like the rest of you I am so tired of not feeling well and keep wonderinng if I feel thiis bad now whiich has been progressive sinnce I can remember how long do I really have before I can't do anything except lay somewhere in pain.
hi..i see you are trying to get to the bottom of why just when one thing seems to feel better...the next day something else hurts. i have alwyas been very active..now just barely. have had several tests also..dont believe thedoctors...said i have fibromyalga...but i feel worse than ever...so much my anxiety is over the charts...gone to hospital thinking heart attack..heart is fine..now im just scared...my question or comment to you is...why are you not afraid to find out...i am terrified it is something bad...how do you stay so determined and not afraid. i admire that.
Jeff Morris, I was saved when I was a teenager. I am now 51 yrs old. I started having back trouble when I was in my 20's I have had to crawl to the bathroom, been bed ridden for days and had a back surgery in 94,98 and 99. I have been on disability since I was 42. Over the last 11 yrs my life has been AWEFUL. There are very few days that I am not in pain and feel like crap. I use to pray for healing and went to a church that belived if I had enough faith I would be healed..NONSENSE...long story short, I have come to the conclusion there are some things in life that God has nothing to do with, THEY JUST ARE. What I mean is not everything is because God did or did not do it. Somethings are the way they are just because thats the way it is. My hurting has nothing to do with anything I did or did not do. It just is. God had nothing to do with it, it just is that way. If not, then you would be telling me that the God that created the Heavens and Earth and sent His only Son to die that I may live, the God who knew what was going to happen before He ever created us, knew we were going to be in this much pain for 20,30,40,50 yrs but choose to let us be born anyway. I know the Bible says that one day all tears will be wiped away and there will be no more suffering and pain. The Bible also compares His love to us like we love our children. There is no way any of us would ever let our children be in pain. after yrs and yrs of thinking and praying and reading the Bible and listening to preachers, there is a lot that just does not make sense. I also know the Bible says His ways are not our ways, but it says He knew us before we were formed in our mothers womb. I would like for you to explainto me why would you design a wonder, magnificent thing that you loved enough to give your life for and then make it hurt, deformed or throw in a fire. So many people think if a person goes to church it makes them all right and if they are doing good in life God is blessing them, but if there life is a mess then they must not be right with God..Yeap, heard this from pulpits for yrs...Please, don't preach me into hell, because I love the Lord and accepted Him as my savior many many yrs ago, I just don't think everything is
because of God...
i have been suffering from chronic pain for at least three or more months now. it came on suddenly and sometimes feels like electrical shocks all over my body or it will sometimes feel like sharp, stabbing pains in my back, lower abdomen, face, scalp,etc. and travels around my body. my doctor prescribed gabapentin for pain relief and it helped for awhile but would wear off after about eight hours and as a result, i had to take more than what was prescribed. the doctor refused to refill my prescription until i went in for a check up and i haven't done so yet due to my work schedule. this pain does make it dificult to do every day activities and i also sympathize with anyone who might be experiencing this type of pain also.
I have Chronic Fatigue syndrome. Started after a major health crash and heart operation. Recently I have slowly developed these additional pain symptoms similar to you. Cannot get a good sleep due to pain on the pressure points. I have the best bed mattress and an additional topper of memmory foam, yet I still hurt. Lay on my left and even my arm hurts resting on my body. Seeing my doctor today to see what can be done. This is seriously adding to my usual chronic Fatigue and very worrying. Will let you know what my doctor says.
I am a 35 year old male and have been living with constant pain since 28. Burning, stabing, acheing muscles all over my neck, back and shoulders.Ofcourse I cant sleep more than 2hrs before wakeing up in pain and being forced to switch positions.It makes me feel drained all day every day.Throw tons of aginizing pain in and my will is broken.I have a wife and 3yr old son with a daughter coming Sept 14. I try to play with him as much as possible but its hard,luckly he has an amazing mother who divotes her day to him,between the two of us he stays happy happy and my mom is just next door waiting to spend the day with him every week end.Befor my son I made alot of terrible disicions regarding my body and I use to think it was the cause of all my problems. According to my very very expensive Doctor it may have been destined to be. He will be running some new tests soon and Ill know more about it but he says one thing is certain My body will never heel. All we can do is hope to slow it down.Apparently I have some vitamin diffeciancies (B12 & D) aswell as very low T or testosterone. These are things my previous DR tested for but didnt treat. Anyway since I was forced to switch DR I have to say I feel alot better still not sleeping but hope to get him on board with it. Unfortunetly I quit my job recently and it has made mass financial problems for my fami9ly and I, I know stress makes my pain worse but I feel like the loss of activity has done the same.Granted whem Im working it hurts bad enough that I find it difficult to walk and the knot are still there but after a while it seemed less not gone but when its such a constant thing any is a great thing.Over thr past month my pain has triple,I am dreding going back and working through all of that again but disabilaty want support my family right now Ive just never paid in enough to get enough. Well thanks for listening to me and please keep my family and me in your prayers Ill need all the help I can get when I finally find a job and have to start workimg again. I am to young for this crap!!!!!!
I just want to mention that when I was tested and informed that I had low vitamin D,B 12 and low T, I worked out side and not just a little all day every day.6-7 days a week 10-12 hours a day.Im not sure why or how it was low but it seems that all my symptons have been mentioned by most every one.Has anyone had their levels checked since they started taking vitamins to see if its working? I have not.
please read what i posted there are options out there for healing dont be left in the dark i am 28 and have had fibro since i was 15 i have only started looking for cures since i was 24 and i have finally found a way to live and regain my life back doing things i enjoy and having fun in life please dont give up there is hope!!
god bless you and i hope you choose a option that fits for you dont give up!!
the flares of pain can also be cause by anxiety and stress try to live a calm healthy lifestyle and you wont be so stressed and anxiety problems wont happen and you wont be in AS much pain
My name is Cynthia. Just turned 42.. I feel like im 90. My blood work all came back good in exception with vit d level (18) Im on vit d 5000mg a day.. But I just wanted to say thank you for sharing what you do and eat.. I will be doing the same.. :)
i feel so sorry for you because i know what you are going through,i have just turned 44 and have had all your symptoms for approx 6 years,i have had 4 cortasone [pardon the spelling] injections in my left hip and 2 operations in the last three years but still it hurts like hell,now i think they have give up and told me i need a replacement,im not covinced due to all the other cronic joint pains i get.i have put a bit of weight on due to not been able to excersise ,just too painfull,i have to get my wife to put my sock on in the morning or sometimes my kids and i find this so degrading.we had another baby 2 years ago and cannot do the things fathers should be doing.all of my muscles and joints are sore all the time.wake up most nights with num arms and hands .if it wasnt for having such a beautiful. wife and children ,i think i would do the unthikable because i dont want to suffer ,and feeling like a burden on my family anymore.i do hope one day you get cured,because i know what you are going through and i would not wish it on anybody..yours .....joe....
I went to my doctor and these are the actions taken.
For the active leg I now take a full doze of Magnesium permited a day on the morning, plus a 'one a night' Kalms table on going to bed. This definately worked.
The pains on pressure points ie. hip arm etc in bed. The following: I was prescribed Amitriptyline Hydrochloride. This is in liquid form. I take just 1 mg of this Oral solution plus 2 paracetamol 500mg tablets to go to bed.
Believe it or not this is working. The last few weeks as the best sleeps I have had for a very long time. The Amitriptyline, I was given 10 mg tablets originally and after taking just 1 I slept 24 hours! I happen to be very sensitive to the drug. 1 mg is fine for me but it is a case of starting on 1 mg and after a few days take 2 mg and upward till it works for you.
The reason for the Amitriptyline is this, as explained by my doctor. The reality is that where you hurt is not really due to any injury etc. it because your brain THINKS you are hurting yourself. Your brain decides you are hurting - not the place. Amitriptyline dulls the brain part doing this so you actually stop feeling pain.
I hope this helps everyone. Oh, also I asked the doctor if I may or not be defficient in vitamin D. He said he would be suprised if I was, but being a good doctor I had a blood test. Guess what? I was defficient and this can be the reason for these sympyoms. He is refereng me to a consultan regarding my blood.
I still have Cronic Fatigue Syndrome but who know what the blood treatment might bring.
You are so right about to go out side sit on the sunlight. That help as well.
MS E: Just read your comment that you "tell your friends that it's like having cancer and your're just waiting to die." I remember once telling my husband that "it's worse than having cancer, because at least with cancer you know you'll die and the pain will be over someday." Pain, pain, pain. Everyday and then one day you feel fine. You hope you wonder....am I better, but no, the next day hell and pain, pain, pain returns to crush your hope.
My husband had incredible joint pain and was found to have Lyme's disease. It must be treated with tetracycliline immediately or it can continue to cause further damage to your system!
Victoria, You're advise seems refreshing. Pain is terrible, and I know with all the stress of today can relate to all of our pain. I just want to "thank you" for the advise and ask if you would pray for me to soon feel better. Jesus is my Savior, and I 'm blessed that HE would save me. Praise HIS name!! Psalms 33:21 hugs~
I feel the same when I go to sleep so much that I end up doing yago to strethc the pain. I have trued multi vitamins but they make me hypertentional and effect my emotions. A tramadol tablet only helps me feel happy. I feel asthough I have fatigue in the winter and summer and both natural and unnatural lights nother me. I have done some research and I wonder if I have skelotol muscles problems or have become haunted by my own nerves.
i have the all over body pain, but my feet sometimes wake me up..my hands also do that..it feels like someone slammed my limbs in a door. It is a horrible pain. when this gets to be an everday pain, my dr gives me Vitiman B 12 injections..he prescribes the shots ( not the pills ) & I give them to myself. He prescribed 1 shot every other day, & IT WORKS! It doesn't help any of the rest of my body pain, but it DOES stop the foot & hand pain.
I have no answer to this. I have pain all over my body too. My upper arms, legs, knees.. It feels like I worked out real had and have pain from that. But I have not worked out real hard. Nothing in the way of pain medicine helps. Stairs hurt. Everything hurts. What is this?
I've been reading through these posts and I have had many of the same symptoms that you are talking about. I was diagnosed with hypothyroid and low Vitamin D, and have started on a treatment that is ongoing. From the research I have done, I have learned that there are many that believe a lot of these symptoms are caused by poorly diagnosed and undertreated hypothyroid. If you want to know more, I strongly suggest you buy the book "Stop the Thyroid Madness" and study it very carefully. There are doctors that believe fibromyalgia is undertreated thyroid. The thyroid gland is very complex and a one lab fits all doesn't help relieve symptoms. Good luck to all of you -- I can relate!
I was diagnosed with fibromyalgia and fascia syndrome by two specialists in 1995. I thought I had a five month flue ..I hurt that bad and if anyone touched me I cringed. They knew very little about FMS baxk then , at least here any how and I was told that I probably knew more about it than them.NOT! I was also sent to a psychiatrist who tried to load me with medications, which I refused to take. My reasoning then was if i am so pilled up how do I know what really helps me and if i am getting better. So i received from him intravenous vitamin therapy which helped a bit. I then proceeded to believe that this darn insidious disease was going to leave the same way it came.
I had had a hysterectomy prior to this with a spinal for anesthetic , so I started there and went to a chiropractor renown for his healing methods. He told me he had been treating FMS long before it was named and his name for it was sore bones which in turn causes sore , weak muscles. He took me off all milk products and told me to take caltrate twice a day. He has a method to test bone strength which he developed and mine were very weak. I was 44 years old and he told me lucky for me I came there. i had also been in several car accidents so i thought maybe things were all pionting to slight spinal or bone trauma , which even a fall can cause. He told me as well that when women have surgery or a fall or accident or shock of some kind it can affect hormones causing calcium to slowly leak out at the site of the injury tho it doesn't show. My bone strength increased monthly from 13 lbs pressure to 24 lbs pressure . When I hit that level I noticed I stood straighter and I didn't hurt like I did. I no longer had to lift my head off the bed with both hands like an 85 year old woman.
I began to take melatonin to sleep and I remember when I first dreamed again after 3-4 years of no dreams or real sleep. I knew then that I had finally had REM sleep , the 4th level where healing occurs. I was back to work by then and this was crazy to my co workers because I was REJOICING Over the fact that I was perspiring,which had left me as well. A sign of normalicy.My bone strenghth increased to 32 lbs pressure and I was free of pain and sleeping . This took two years . I have been working during and since then . My regrets are that I waivered off my calcium etc. program and I smoke ..BAD combination. So after a few good years and due to my BAD, my bones got weak and pain was returning and I knew.....
but ignored the facts. In March 2011 , I fell on ice and broke my left hip. * months later I had learned to re walk and went back to work. Today in the past 4 months I am suffering again. I see my Doctor soon and I believe it's the FMS is back along with it's friend arthritis. It's not at the place it was but close. I wke 3 times a night. I can only sleep on my back or right side. I have the digestive and bowel upstes and the "don't touch me" pain. My body once again has been hit by the MAC truck.lol And of course STRESS exacerbates it. My bone scans indicate osteo now due more to the hip.
I know what I need to do. I take tylenol only because I drive on my job and week ends tylenol 3. this only takes the bare edge of and sometimes I have tears. I just celebrated 25 years of service on my job and the last time i celebrated was June of 1995 when I was awarded the Highest human service award the day befor my first diagnoses. Funny how live sort of repaets lessons.
There is so much more to say.however , my point is , If you have found something that works for you STAY ON IT FAITHFULLY. This insidious illness starves us of the very thing we need to heal DEEP REM SLEEP. So if you have found answers to that as well STAY on it.
How is your pain now? Are you still drinking to ease out the pain? I am in the same boat what you have mentioned. Please share your experience and treatment you have taken.
My husbands' pain also started after a very physical job at the same time dealing with his father dying on hospice. I do feel the physical and emotional stress brought this on, buy sill no answers 6 months later.
I understand what your going thro;ugh. I feel the same. Have you found any help?
I have the same disabities I think as you; for the most part. It sucks.
I am not sure if you are still on here? I have you gotten better since 2010...I have had severe pain all over my body for almost 12 years and they keep saying fibromyalgia but the meds do not work, so I am always wondering what I am doing wrong. I seen how you said your feet felt like someone beat them with a bat. That is how my feet feel everyday. Working is very hard. I cry constantly because I am only 44 years old and I sit around wondering if this is how my life is going to end up. No one will talk to me about it and I feel like they think I am faking. I have had horrible depression and I have to work because I am the only person to pay my bills. please if you are still on here and have had success let me know.
I know exactly how you feel. Please get your vitimin D level checked...just a blood test. I cant say enough how importan it is...lack of D causes fatigue, pain and eventually rickets. I take 60,000 units of D every other day ( I get my level tested every 3 months ) B Complex for energy and nervous system...multivitimin...Omega 3 fish oil and fever few for inflamation...Inflamation causes more pain and we certainly have enough so whatever you can do to help swelling will help...Good luck and please keep me posted.
Oh my God reading your story is like you was writing my story, the pain level, family and all Girl I don't know how you do it but it's like I really don't know what else to do or to turn. I've had surgery after surgery, injhections after injections, procedures after procedure. I've tried all kinds of meds and nothing seems to give me much relief. I pray that God would Grant us a solution to this what ever it is so we can continue on with our lives and live our lives to it's fullest. SSD DENIED ME OF DISABILTY BUT I'M JUST GONNA TRUST GOD IN THIS MATTER AND DECISION I'M FACING.
To God Be The Glory
Humbly A Woman Of God in GA.
same. my stomach hurts bad and i feel like vomiting. and i think i have tinnuitus. MABY. plz. i cant live. HELP ME. and its so boring no matter wat i do.
I read your post 24 hours ago and took your advice. OMG! Today is the first day in over 2 years that I woke up pain free! I am actually going to try and go to my mall today and walk which is something I have not been able to do in such a long time! I can not thank you enough for this "natural remedy" and truly believe now that we have all been poisoning ourselves with medicines from the doctors..Again thank you! I hope you read this because you gave me my life back!
I tried going to bed hoping I could go to sleep.......sleep what is it. Like you i sit here crying as I am trying to type this. I am 80 years old but have never felt like this. LIke you I just want to be my old self again.
It is barely possible for me to survive getting through the day. I go to bed hoping for some rest.
I took a fall exactly three months ago and my life has changed dramatically.
Wanting answers I went online and just typed in: my body is sore to the touch all over. The reason I typed that in is because all of a sudden realized that my stomach is extremely sore.
Well up pops lupus arthrisis and fibro........
After reading lots of posts ...... I am thinking depression and guten could be the culprit....
The last few days I have not had a good diet meaning I have eaten a lot of gluten stuff. I am depressed because of several things.
Realizing that gluten could be playing a huge role in how I feel will clean up my eating ...... starting tomorrow.
If you have sleep apnia on top of fibro thay feed off each other making both worse. You don't get enough sleep so not enough energy it just adds to it. Hopefully anyone that has both doesn't have pain so strong that they can't use a cpap or bipap or oxagyne machine. I'm still not sure what to do about that.
My problems are similar to yours, I'm 28 and I'm trying to get through Vet school and have a career, but its hard to see a future of anykind. I totally understand everything you mean when you say that we live in constant hell. Its so true. I just wish that people my age were more understanding. I'm bullied alot about it and I'm told that I'm a 'negative person" becuase I'm in pain all the time. I'm actually a very positive person, its just that becuase I am young people don't think I can have this problem. Its horrific and I don't know how I am supposed to deal with this.
barb I too feel the same way, it took me forever to find a dr that finally fiqured it out, i hate waking up in the mornings. i live with my oldest son who thinks i am full of BS, he had a back operation a year ago and still complains but gets out and paints rooms & does lawn work etc,then sits on porch & drinks & smokes with his friends & tells them all how lazy I am & how I am faking my pain and he complains constantly that he will be in a wheelchair by the time hes my age 55,hes 37 yo he doesnt even begin to know what real constant deep imoblizing pain is. i live on 600.00 a month ssi and have to move out of here he told me cause I sleep in my room alot, even though i do laundry, dishes, make my 9 yo grandsons urine soaked sheets & blankets daily & sweep all houses wood floor, i cry as i do it, but thats my room & board with him, i am border line ready to just end life, this is no way to live, best wishes with your pain & god bless you & hope you have a family that helps email me if you'd like to. shara
So many undiagnosed people in pain. I have been in severe pain since 2004. Diagnosed with fibromylagia: treated with an antidepressant which worked.
Diagnosed a few yrs later with polymylagia rhumatica: treated for 2 years with predisone. One year later the pain is back worse. One issue is each year I have to find new doctors as they drop out of UHC HMO2 (medicare) for non payment of approved fees by insurance company.
I have the same problem and no one can tell me what going on.They done Blood Work and Scat Scans, Utra Sounds and still can't some up with anything Yet..Did a 24 hr Urine Test and still nothing..My Doctor mention Artritis and Fybro also .So she gonna do more blood work then go from there...I am like you tired all the time and don't want to do anything because of Pain all over . It even hard to try to sleep at night with pain all the time.If you fine out on your end let me Please...I have hurt from Finger to Toes for the past 4 months.I could curlup in corner and cry because there is so much pain..Have a Nice Day
I have suffered with chronic all over pain for over 10 years. The last 5 have been unbearable! I have same symptoms as you. I am exhausted all the time, my house is in shambles, my laundry is unreal. I have 2 children: 11yr old boy, and 7yr old girl. My husband works night shift, and i feel that I SHOULD be able to take care of the household. But I can't. I have to tell my kids "no" to going outside, or playing; things like that. The depression has gotten so bad that suicidal thoughts were invading my brain! I am starting all over with new pain specialist. I have to go thru all the tests I have already been thru several times. But THIS doctor has given me some hope. I know I have fibromyalgia. And several discs that are bulging in my neck. But this MD is doing BLOODWORK. I see a blood specialist next week. One thing he mentioned was my cortisol levels were very low. Your body's OWN natural anti-inflammatory! I don't have near enough of it. This is just 1 little thing that they have found out about my blood. I'll know more next week. Keep ur chin up. I know how it feels to be in so much pain, and want to do things but can't. Don't give up. There are answers....we all just have to try to be patient enough to find them. Love to all of you who suffer with this. Best of luck as well!
Big but gentle hugs to ya!
Hi, Sorry to hear that you are ill. I myself had a mass in my adrenal gland...called pheochromocytoma... It was left in me for 8 yrs. All my hormones were 3 times the amount.
I do know that cortisol is from the adrenal gland. A helpful suggestion to get them checked...24 hr urine will show how the adrenal glands are working. I had the one removed and now I am on prednisone forever. And my whole body is out of whack..Lupus, diabetes, fybro, anemia. Just a bunch of things. Pain everyday. I hope my info helps. Take care . Sorry to hear about everyone that is suffering.
Well hello Sarah. My name is Tammi and I am 45 years old. I am feeling the same exact way you are except I also have knots on my elbows, fingers, and bottom of my feet. I have been told the same thing you have about the Fibro and Arthritis. I have 3 doctors and no one came come up with anything set in stone. I cry everyday because I hurt so bad. None of the Doctor's will give me any pain medicine and I don't know why. I am suffering here so bad because my everyday living has totally changed. I have 2 children; my daughter is 17 and my son is 15. They help me out alot. But I am the provider her not them. I cry because I can not open jars, milk, or even a box of cereal. What are we going to do. I need help bad.
need to go to a NEUROLOGY have had thesame thing for years took any pain pills i could get but nothing help the neurology told me to get lots of rest andthe spells that i am haveing is something in my brain all the beating my hubsand gave me how many have hurt me going for test . there is not a place my body doesnt hurt. they think it from th brain i was hit so much so get your self a good neurology and good luck bonnie e-mail email@example.com
sarah i have the same pain one doctor told me i have fibromyalgia. need lots of rest nothing to upset you. be in and out of hopstial how i have a neurology now they are doing test on my brain nex week hubsand beat me alots so how they think he did something to my bran i have trouble trouble with my left arm going crazy thenit ok for awhile what next.find your self a good neuroloy them you will no what wrong good luck email firstname.lastname@example.org
Gentle Hugs to you Tammie. I too was in the same boat was diagnosed with FIBROMYALGIA in 99 and then SARCOIDOSIS in 2003, I do continue to have all over body pain. I know how hard things can be when you're not feeling well. What worked for me was fighting back hard. making the doctors listen and researching. I took my issues in my own hands and had to demand attention in order to get my life together so I may be a better mom, person, I too was so depressed I just stop bonding with anyone. please go to the doctor and make them listen I'm on Cymbalta and little if any pain meds I chose yoga please just try because this pain will run your life.
good luck and soft Hugs, Cynthia
Because they don't really know whats causing the pain they label it Fibromyalgia, they really don't know. I was diagnoised with Fibromyalgia and I went to a new Doctor for second opinion, he educated me. They came up with the name Fibromyalgia at they're Medical conference. They asked all the Doctors what there seeing that they can't diagnoise and they list all these symptems that we're having and then created the name F. My doctor said that this was unexceptable to him, so he has and is doing further studies on this disease. To first say I had such horrible pain, it was almost to the point I couldn't go on another day...This Doctor told me the very first thing he wanted me to do is get off whites (white diet) I started that day, and I can't believe the difference, not only has the pain gone from 100% to 10% I feel great, I really don't notice much pain at all. I have tons of energy and can't sit still. It is true, you are what you eat. I was also diagnoised with Lupus in the early 90's another auto immune disease, found a doctor in Scottsdale Az that educated me with that, to much yeast in the body, I have felt great after I treated the canditia (Yeast). Yes, there's answers, you just have to find a good doctor, hard to do. I feel very fortunate. My present Doctor told me that he could probably guess that I have some sort of tramma in my life, and what happens the brain this wonderful computer that we have can't handle the pain from the experience and it steps in and it handles he emotional pain your having, and the effect is pyhsical pain. I let him explain all of this to me and when he was done I enformed him that he hit the nail on the head. This is what his studies has found and everyone that I know fits the criteria, and I know a lot of people w/Fibromyalgia. But his suggestion worked. I have also benefited with a wonderful weight loss that I couldn't get off. It's worth the try, better then the pain your having...Hope this helps.
I saw your comments regarding your doctor telling you to get off whites. You said you gave it all up and feel better. Could you please tell me what you gave up eating that helped you and if you are still feeling better because of it?
I too have constant pain for over 15 years which started in my neck, shoulders, etc. Now the pain is spreading to my feet, knees, hands, etc. I have been to many doctors and had many tests and no one has helped me.
Eliane, did you ever get a reply from Dajiana? My sister is in severe pain every day. It's been going on for about 7 months. She has been to countless doctors and taken all kinds of test, still no solution to her pain. If my sister is eating something that could be the root of her pain, I'd like to know. Phyllis
Dajiana, could you specify what you mean by "off the white diet"? I have a sister with all the systoms you are having. She was diagnosed with Fibromyalgia several years ago, but these last 7 months have been unbearable. Phyllis
My name is Theresa... if I may chime in... By whites he means white flower, white sugar, cornstarch and all the processed foods without fiber that is refined, bleached, etc.
I am in constant pain for years now and the last 2 years it is gone really from bad to worse. I am suspicious about the regular diet. I believe I need an all natural diet; i.e. fresh vege and fruit and some meats, fish, and chicken without all the trimmings. My problem is, I have a food addiction problem and cannot stick to natural foods. I'm praying over it becuase I myself so far have been unable to accomplish it. 5 years ago I went all vegetarian for several months; I had no more hypoglyciam and could work without noticing it's lunch or dinner time due to the very high energy. Of course, the weight just fell off - 40 lbs. which I now have back. I know by intuition that it is probably the diet; unless it is the bottled water I am drinking for several years now. I thought about this yesterday. I buy spring water. Maybe there are some chemicals in the water that are making my body toxic? I am concerned.
Going off Whites basically means going off of any food that is white
White starch, potatoes, pasta, rice ect. Eat whole grain foods. Also a word of advice would be to remove artificial sweeteners and carbonated beverages from your diet. Add magnesium to your diet and try to cut down on sugars because they turn into Carbs..
hello tamee, hve just read your post, and now i know that maybe there's nothing wrong with me i am in constant pain and my gp doesn't offer me to have blood test or to see a specialist, it is just medication all the time and that doesn't help at all, sometimes i feel so ill because of feeling tired, even got to the stage where i have lost my appetite because there is no respite to it all. thank you for your comments does help to know that i'm not alone with the problem. thank you
Hi just you i have been in real bad pain for 3 years now. Now i can't help with the pain but i can help with being exhausted go to the drug store and get vitimen D 1000mg pills it will give you energy it does for me helps me get stuff done around the house i have 3 kids 8,5,2 that i take care of by myself.
What do you mean when you say stay off the white and the yeast? Just white bread or what else? please email me at email@example.com Thank you so very much.
vit. D? really? my dad just started going in for vit d injections. i hurts from head to toe. burning feeling to.
i was reading ur story ans i have alot of the same issues. my owe family has fibromyalgai... i been in the hospital ive told doctors even doctors to me idk whats wrong.... i cant stand the pain in my body its evry where i dont want to move sometimes it hurts so bad. i dont feel like amyone understands me and doctors anit taking me seriously .. they told me i have to go to pain doctor idk ... but i dont have insurece eathier..... well though i let u know i understand ur pain... if you ever wanna talk email mushbush2904@ yahoo. com ... im 28
Have any of you had iron levels checked? Low iron will make you feel weak and drained and hurt tremendously.
I am so happy to hear that I am not the only one who feels this way and has no response to why! I am only 46 granted I am overweight like most the world is but I should not be feelinbg as crappy as I do! I hope that today you all woke feeling a little better!
my body hurts everyday..and It started when I was 33 I am now 36 and there are times when I cant breath..it sucks..I was diagnosed with Fibromyalga but it is really hard to cope with as I have three kids and the house is just well lets just say I cant even clean normally ...my vision is blurry and it feels like someone is squeezing me and then it feels like I fell out of a three story building..somedays I cry then laugh..its tough...I get scared because I feel like what if I have cancer and the docs didnt find it..having chronic pain sucks..I take clonozopan for anxiety,,it seems to calm me down a bit but pain is still there and I take one tramidol a day..and tylenol pm to try and sleep...some days are better than others but the only thing i have found that helps slightly is my friend makes me some tea called echanatia if im spelling it right..but life has really changed...I feel you..blessings,
I fell the same way Sarah I have been in pain for almost four years now since my third child birth I have severe leg pain and restless legs and my dotor cant find nothing wrong or why i get this pain so bad I have migrains, feet numbing,back pain and now my left hand is starting to go numb alot the only thing that takes care of my pain is pain killers sad to say but my doctor doese not want to perscribe me any what to do? I sure dont know what to do any more like there is no hope for me out there I always give up going to the doctor because I feel that they do not want to help me I am severely depressed because of all of this I have droped 25lbs in two months because my pain just gets worst as my days go on I take anxiety pills but they do not work fo my depression it is so sad I have to live like this so tired of it and I am only 23yr. old I should not have all of theses problems my whole life is on hold because of all my pain.I am so sorry for your pain you have I can relate but you are not alone in this i hope my story helps you out but I am stuck I dont now what to do anymore.
i am the same way. I'm fatigue alot, I think from the medications and pain killers. They do not know what is wrong with me either, other than Fibromyalgia. At times, I wish they would fire me bc I just can't seem to do it anymore. my arms, shoulders and hands hurt chronically. I type for a living. I work in a call center so it is constant being at my desk, typing with just two 15 minute breaks. Not sure what to do.
im 33 years old i have been depressed for the longest.I have four beautiful chilldren .I been getting sick and i have been back and forth to the doctors they did blood work and they did a x-ray on my head they said nothing is the matter with me then when i got stressed i have been having all kind of problems and i took a test and im so scared and afraid all i do is cry....
I went to a neurology but they didn't do anything they did some MRI's which came back as nothing was wrong with me. I was injured on the job where I fell off an 18 wheeler trailer I was on worker's comp I got settlement but not for pain and suffering my attorney said workers comp don't do pain and suffering anymore. But I found out on feb. 28,2011 that I have CHRONIC PAIN
I feel everyone's pain. I suffer in the same manner. I first realized the "pain" when I was about 36 years old. It started in my feet. A burning type of pain. Then I was just fatigued more and more. I'm now 48 years old and have been diagnoised with RA. I would have never imagined my body hurting this way....NEVER....I mean I know expected some pain with getting older, but this is totally OUT of this world!!! I take 800 mg Ibruprophen as needed, but now it seems the one or two every other day isn't enough. When I sit I feel a burning pain, when I lay down I feel a burning pain. It hurts worst in my outer hips and feet. I sometimes limp when I get out of bed because of pain in my right foot. I feel like a 70 year old and I haven't even turned 50!! My God I can only wonder what it will be like then. I wish not to be some crimpled up old person, confined to a nursing home bed, in constant, severe pain!! My prayer is that the good Lord just gently and silently carry me off to heaven during my sleep. That's the best way out, but that's not to say I don't want to reach the age 70 or more. We just never know what's going to come upon us in life. I wish everyone the best, and my heart really goes out to the 23 yr. old. Truly NOT FAIR!!! God bless one and all.
I am going to post my story as well but reading thru these i noticed you said tramadol and wanted to tell you be careful cause that does more damage long term. might wanna switch to something else. also neurontin... all these meds long term have irriverisible side effects. i know what all of everyone is feeling on here and have not found the answer either! I was on Neurontin for 8 years and when I went off thats when pain started. So, my question is was it masking something or have all these legal pharmecuticals I have taken since 13 for deppression and anxiety and ptsd the actual cause? hollistic peope telling me yes but they dont have answers to dealing either. gonna post my story at bottom. kelly
Hi! I was just wondering if you have asked to be checked for ms? My aunt had it and they are testing me for it as well. I was diagnosed with Fibro in 05, I am also anemic off and on, I have a tumor in my uterus, adhesions in my intestines and diverticulosis as well as sever carpal tunnel in my arms. It is very frustrating and I have 2 kids and I tired and in pain all the time, the doctors never listen and sometimes I think they purposely say everything is normal to play a trick on me lol. My back pain is so severe and I am going to neurologist next week with my mri cd, I looked at it myself and I have been comparing to other mris. Just don't give up and ask about the ms and any autoimmune diseases.
Wow I cannot believe alot of people feel like I do. I hurt all over and it is everyday. I have older kids and grandkids and also a eight year old that I had at forty. I was a caregiver for my mom. She has been gone for two years. My pain started about a year ago. I haven't been told by a doctor what is wrong yet but even if you tell the doctor, they really don't listen. They think it is all in your head. I wish I could feel good again!
In the last 6 weeks my body has been taken over by pain. My bloods so far show slight amnemia and flammattry (sorry cant spell) problems. You say you are on a white diet - what is this ?? I cant believe the speed this has ripped through my body to say I am terrified is an understatement. I feel my whole life has come tumbling down around me, we are farmers so life is tough enough without this I am only 47 with 2 16 yr old girls who are just going through GCSE s so they can do without any distractions. I have come across all this by accident and dont know how I will pick up a reply my email is firstname.lastname@example.org Any advice would be gratefullly received.
EVERYTHING you saying I have heard has worked. I have a friend who eliminated the yeast in her diet, she managed to loose alot of weight and has been pain free it is the Gluton Free diet. I have to make up in my mind to do it because living in constant pain is terrible on all involved. I have no quality of life anymore. Also, to be mindful of the brain, so I had started trying to see a therapist, I noticed relieving the brain of all its stressors has been relieving and allow me to feel pain free. Thank you for reaffirming what I have already been slowly researching.
Go to a a pain clinic, maybe you can get some pain meds? living wit untreated cp is not good. If you cant find a good doc keep looking!
i am 33 years old i have having pain all over for the last 3 year i have all the blood work don int the world and still cant find eanything ,the doctors have seen told me am too young to have fibromalgia but i dnt think so i cant do mutch with my kids because of the pain.can eanyone tell me if they think am really to young to have fibromalgia or coud it be something else?
sarah, hello, i'm 39-years old and over the past year in a half, i have been having pain all over my body,it started in my throat,chest and stomach, they told me it was gastric reflects disease but that dont explain the pain i'm having in my back,chest,shoulders,neck,hips,legs even my toes. i think im dying and i have no insurance. keep me updating on your health. have a nice day. sharon
This sounds so familiar. I too felt awful with pain in my stomach, hips in the morning and in my arms, hands. I changed my diet and lost weight and man do I feel better. I also had IBS and after the weight loss my IBS is no more. When my doctor first told me there was nothing medically wrong with me it was because I was overweight I thought he was nuts. But it turns out that he was right on the money. I just didn't want to hear it. Try losing weight and eating healthier and get daily exersise you will be amazed how well you feel.
I am 29 years old. I have been battling with body pain for over 5 years. I have had MRI's Scans and every other test they can think of and all I am getting is some high liver enzymes but the drs. say it is from the meds. I cry I sometimes wish I could just lay around but that hurts also. I have had a dr say they think it is MS. I have some of the other symptoms but nothing else have been done to check. I just feel overwhelmed with it all. I need to be able to take care of my family and myself. Thanks for the Help.
I like what you are saying and agree that losing weight will help. But my problem with pain began when I was 30 pounds lighter. The pain has kept me from exercising as I did before. When I take predisone it goes away. It seems to be inflammation all over my body. My daughter has it. When she was doing some work on a house that had mold in the walls, she got pain all over her body. She gets it when she is around mold. I notice that I get migrains and pain when a northern front comes in. When I am in Miami or St. Croix I don't get this. I take Mobic every morning and when I don't take it for 7 days, I can hardly move. The pain keeps me up all night. This is so weird. If it is nothing, why do anti-inflamitories help? Why would predisone help? The pain was so bad last night it felt like something was pushing on little nerves in my hands and various parts of my body. The first time I had this was after I had surgery. I had so much pain in my back and body that I could not sleep. I thought then that they had dropped me. That was in 1994.
My house is a mess and I have a demanding job. I will praise God no matter what happens, but how frustrating.
hi i am suffering from aches and pains all over and sooooo tired....they have checked me for lupus ra..negative... i also suffer from hypothyroid and u can feel bad from that as well but my dr keeps sayin your thyroid is ok... i am goin to a rhematologist in a couple weeks i have a baby and its soooo hard sometimes .my hands feet toes back arms ache oh ya and fingers it hurts soooo bad... how r you doin are you on anything
I also have horriable pain all over. It stared in my legs and I thought I must be wearing the worng height. I have changed shoes life style all because of pain. I have been to my same dr. for the whole time he gave my a lot of tests. Blood, nerve test, MRI, Cat scans, XRays, PT pain killers deep stem therapy Sent me to a pain specialist who injected cortozone in my back. Nothing helps pain killers help that I don't feel it and can sleep and do some work. But he is afraid I will get adicced on 2 5mg a day. I love to walk, swim, garden etc. Can't do them at all I was dying today trying to weed. Had to come in and cry of the pain and the restless leg My hands and forearms throbing. He thinks is fibromyalga took Lyrica and was at a loop on 150mg
I could'nt function. Scarry driving. Now the any relief I was getting he took away. He said the pain pills were not helping just creating an euphoria to mask the pain and they can be addicted. I could control myself with that. Have been but not having them and living like this is bad!
Debbie, I also feel this constint pain everyday/nights for roughly 5 months also...I was in a major car accident in '89 and the pain has progressed over these 22 years, I continuoisly blame it on the accident...but now im not sure any more I live in Michigan and donnot have medical Insurance. I also have Arthritis and possibly fibro as well noone has been able to diagnos me correctly and without medical Insurance I cannot complete testing....with or without medication I'm always hurting as well....God Bless... Tee
I take Gabapentin and Naproxen for OsteoArthritis and Diabetic Nuropathy. The combination makes my head spin, then add Zoloft to it and I act like I am drunk. If I don't take it it hurts to walk. On top of that I have been diagnosed with early onset Alzheimers Disease. I can't afford to see a Neurologist. Debbie
Sorry, you're not too young to have fibromyalgia. I was diagnosed with it at the age of 22, and I am now 43. It's been really difficult, and for me it has gotten worse with age. I don't know which is worse, the unbearable excruciating pain, or the God forsaken fatigue. I 've tried lyrica, but couldn't tolerate it at all. I'm currently taking amirtrypline and flexrill which helps very little if any. I pray there is a cure someday before it's too late.
I feel the same way. I am 25 and I am extremely overweight, but I know that not all fat people can feel this bad. I have severe pain all the time in all parts of my back, my neck, down my legs, my feet and my hands. I have extreme fatigue and I have small children to take care of. I had several epiderals with my pregnancies and I wonder sometimes if that did not have something to do with all of this. I have been diagnosed with Fibromyalgia, but I do not have insurance therefore I can not see a doctor. I was prescribed Lyrica before and it really helped with the pain. Hopefully someday I can find a way to get some help and not feel so bad all of the time. Hopefully everyone that suffers from these invisible illnesses can someday find relief.
Hi. My name is Debbie, too. What I want to tell you is something that helped me so much. I've been sick with Multiple Sclerosis for 15 years, so I've always had different pains. Anyway, someone told me to go Gluten Free. I didn't have any idea what Gluten Free was. All I knew was that I had terrible leg cramps and severe stomach aches, so bad they made me cry. I investigated on line about going 'Gluten Free'. I quit eating breads and pasta. It was hard at first. Hamburgers and pizza, pasta and doughnuts were my favorites. I thought I'd try this. I didn't need to take any pills. It didn't cost me anything except a little effort. After the VERY FIRST DAY I didn't have a bad night's sleep anymore! It has helped me so much. Just try it! What do you have to lose? I hope it makes you feel better. -Debbie
Sarah and Debbie,
First off I want to let you know you are not alone. I have had Fibromyalgia Since 1990. When I was first told I had it I was in THerapy for Depresion and pTSD sysptoms.
Is was a mental health therapist who told me i may have this condition because it sounded just like what his wife had. Sure enough I went to a specialist and I had all the major pressure points. All these years later I don't have as many flare up but I do have insomnia pain in my legs, muscle spasms. I am no longer thin with all the meds I take I am very over weight for my body type. There is no test or blood test to tell you if indeed this is what you have. They go by your sysmptoms. I am not in pain all the time anymore. I have found that Advil work very good on all my pain. I take so much medication for my Major depression and PTSD that my doctors will not give me anything else. Pysch meds really screw you up. I understand the pain you are in an how stressful it is just hand in there it does get mangagable. Here are some of the things I have found that has helped me.I am a couch potato because it does hurt really bad to stand or walk. My condition is causes by spoual abuse. Stress A the major factor in Fibromyalgia.
1. Reduce stress meditation, relaxation music.)
2. keep your emotions in check. there is a mind and body connection,
3. Find you something you really like to do and do it. Mine is playing my Dsi games.
Good luck to you all.
and God bless you both.
i have had pain swelling and hives 24 hrs a day,,,for 15 years now, i have HAE with hives and fibro,,,nothing helps,,, i take vicodin to get by,,, im so tired and cant do much, im so sick of it. my doctors try to keep me comfortable, nothing really helps, it has ruined my life! to make a long story short,,, i have been to mayo and specialist,,to tell u the truth when a doctor hears ur story they wish u would just go away,,,cause they dont have a clue, i dont tell people this but i have found weed to be the best to help, helps me sleep,,,with pain, and gets me buy,, its not killing my liver like vicodin is, and the effects last a long time with little effort, im going to try the gluten free diet and vitamine D,,,see what happens,,,i wish and pray for all of us,,,i feel like "why me " sometimes,,what have i done to deserve this pain, all i can do is be thankfull cause i guess it could b worse? love and peace guys! hang n there we will cure ourselves>>;-)
It helps me a little knowing that I am not the only one who suffers extream pain all over from head to toe. I have gone to my doctor and was told if I lost weight that it would help a great deal. Well I had gastric bypass surgery and lost over 143 lbs. Six months to the day I was back in the hospital for surgery for breast cancer, chemo and radiation therpy. If this wasn't enough. The all over pain is unbearable and my doctor just says Iam a hopocondriac. You don't just imagine cancer and this constant pain. My doctor hasn't done anything to try and find out what could be causing my pain. constant headacke and extream tiredness. I have had this pain for over 10 years but because I have been being treated for the cancer all of a sudden according to the doctors it is caused from the treatment. I know that it can be some of the reason I feel the way that I do but I have had this pain and exhaution way before the cancer. I am just existing I am not living. I don't know what to do anymore to try and help myself to feel better. What has gotten me through each day is my faith in GOD and I just keep hoping tomorrow will be a better day. Sorry for going on and on but Iam glad I found this web site to get how I feel off my chest and know that I am not the only one. I wish everyone good health and happyness.
What is a white diet??
You know, I have been reading all of these responses and there are so many people with the same chronic pain all over for years. Tiredness, joint pain, left sided temporal head pain, blurry vision on left side, left sided neck and shoulder muscle spasms (bad), depression, a feeling of dragging your body through life, a feeling of not being in there, the pain is horrific and so on. I have had these same symptoms for the last 6 plus years now. I have been to way too many different doctors with too many MRI's, CT scans, this test, and that test with the same answers. Fibromyalgia, cervical dystonia, and at one point eagle syndrome. I am so tired of being shuffled from doctor to doctor with the same thing being said. I am being sent for many unnecessary tests with no answers. I just know that this pain is too much to handle at times and I too feel that I would rather be gone, but I would not do that. I have been doing extensive research on this kind of thing and have found some very interesting reading when it comes to Late Stage Lyme Disease. This disease has all of these symptoms plus more. There is a major uproar in the medical community over this. Also with insurance companies too. They are trying to make it where insurance companies do not have to pay for the extended care and treatment it takes to cure this. The cure is long term antibiotic therapy. Meaning you would have to take antibiotics for a year and sometimes more. Here are some links at the end of this post. I have an appointment with a Dr. Crist in Columbia Missouri. He does Late Stage Lyme Disease testing and is certified to do so. He specializes in it. His office does not take insurance or Medicaid. They only take cash. If you make an appointment with him and do not keep it they charge you a no-call, no-show fee that is quite high. They are back logged for months, literally. The lady on the phone said these appointments are like GOLD. It is 460 for the appointment and 260 for the Western Blot test. This is very controversial and we need to speak out. If you have Late Stage Lyme Disease you WILL be sick for the rest of your life. We need to push for testing and for treatments for this. It is being kept from us that it is not just in the North Eastern states. Here are the links. Keep in touch. My email is email@example.com. I am still in search of answers and I will find them. I can't go on living this way. http://www.lymeproject.com/index.html www.lyme.org www.lymenet.com Lyme Disease: A Neuropsychiactric Illness The Neuropsychiactric Manifestations of Lyme Borreliosis www.angelfire.com/biz/romarkaraoke/Lymetruth.html http://www.LymeNet.org/ www.mentalhealthandillness.com/lymeframes.html
YOu should try Dr. Batchu in Columbia Missouri. He takes insurance is an MS specialist along with all neurology. He is my second opinion person and I go again next week. The first doctor told me I had alternate transient MS but Batchu says no and he is trying to figure out what I do have.
you have to do sports that´s the only way out ,it really helped me with my pains,am well again thanks to sport ,it´s the best pain killer you can think of ,after three years of chronic pain , all u have to do is sports sports and sports,and a lot of sauna,and when ever u have pain always shower warm and cold water,and always alot of movement,and stretching and relaxing and yoga and when ever you have pain drink alot of water and and use a warm bottle on your back it really helped me .by doing all that, no tablet can help ,faster than sports ,tablet and sports is the best combination you can think of ,for a better and a healthy life,i wish u all the best,with my tips, oh before i forget please always keep ur body warm,god bless u all amen
No offense, -but I think this question is asking about pain all over the body for tno real reason. . . not asking about people who have fallin off of an 18 wheeler and have a reason for the pain!!
I have severe pain all over for NO REASON. That is how I got to these posts. Looking for people who might have hope or answers as to why this would happen.
I know what you are going through...... I have the pain too. Thank god my kids are already raised but it doesn't help my situation now. I have pain all day most days. The Neurontin helps some days. I get a strange reaction anytime I do anything (besides sit on the couch) I feel terrible the NEXT day.... It terrifies me from doing anything because the pain is so intense.
Wait a minute- you say you are haing such severe pain, and yet Ibuprofen 800mg every other day isn't enough ---
ARE YOU KIDDING ME? I AM TAKING IBUPROFEN 1000MG EVERY 6-8 HRS, TYLENOL 1000MG EVERY 6-8 HRS, NEURONTIN 2400 MG A DAY, AND THEN WHEN I HAVE NOTHING ELSE, I TAKE ASPIRIN 1000MG!!
You might have sever pain, but I am having severe pain that is unmistakeable and contstant at times with no relief!! I don't have RA, and there is NO REASON for my pain.
I am not trying to say you don't have pain, but I feel like this blog is about severe unrelentless pain that is "out of the blue"..
I appreciate you letting us know your diagnosis in the end, but your pain is barely noticeable compared to what I am dealing with. I am trying to find answers to why I have this severe pain for no reason. tests are negative. That means NO RA. I don't have RA. I have pain. all over.
no reason. Am I the only one???
What the hell kind of sports is a 43 year old mother of 3 grown children and i grandchilild on the way- supposed to do in sports??? I tried racketball last year and my wrist gave out. that was the last sport I had left to try!!! I have PAIN ALL OVER- that's right, I said ALL OVER!! I am looking for realistic answers!!
Every time I do any kind of exercise, I get severe pain the next day, and am unable to move from it!
My sister's doctor put her on a GLUTEN FREE diet and she is feeling better. Worth a try. Just google "gluten free" and you should come up with some help.
Have a consultation with a reputable Chiropracter, Osteopath or Naturopath to investigate and hopefully relieve your symptoms. Best of Luck
I believe a white diet:Is avoiding all white breads & starchy refined foods like cakes & biscuits, also foods with gluten and potatoes. I have been advised to take vitamin D3 as this will
possibly help with the pain,I don't think there is any one thing that helps relieve the symptoms of. eg: chronoc fatigue, fibromyalgia, and chronic arthritis: these conditions are very hard to get a diagnosis let alone get treatment for. The medication for these ailments have a lot of side effects sometimes worse than the ailment. what works for one person does not work for everyone. I am being tested for Lupus as a lot of the symptoms that are found in fybromyalgia and chronic fatigue, aneamia, to name a few are similar to the symptoms of lupus. I have all the symptoms the worst is the all over pain.And butterfly rash on face.
I find the hands seem to be the worst at times also the aneamia , which in turn brings on chronic fatigue, which brings on depression. I have also had a lot of problem with Doctors. I look at like this, its my body and I know when there is something wrong with it . So I decided which specialists I wanted to see and I have gotten answers at last for thing that have been troubling me for a long time. Don't give up !!!! Change your Doctor get a fresh outlook on things maybe the answers will be found..... what is causing your problem/s and how best to treat them :::: Gerry
I am really sorry to hear of everyone's pain. I really do understand as I have had pretty much the same symptoms. Trying to get through a day of work or school or more difficult, trying to take care of your home and children with these horrible symptoms is unbelievable. I wouldn't wish it on anyone. The worst part is that "you look okay" from the outside so it's hard for people to understand or have any idea what pain you are in. To the poor woman whose Dr. hasn't believed her in 10 years, get a new Dr. pronto. There are Dr.'s out there that will listen, even on the busline.
I have suffered from extreme body pain, chronic breast and "other" infections and extreme fatigue for the last 4 years. I found out last year that my vitamin D was low, at 18 mg's. I have been on vitamin D therapy for over a year now trying to raise it. I am at 175,000 iud's a week which is down from 300,000. Now many folks are on vitamin D as it is the "in" thing for Dr's to look for now but if you haven't been tested you really should be. I don't know if this is what is causing all of my problems but I believe it's a lot of them. I can't report yet that the therapy is working but I can say that I have had some relief last year in the summer months and when I have tanned indoors as vitamin D is the sunshine vitamin so that makes me believe that is it. Relief from the pain, the infections and the fatigue was short lived however. Unfortunately, the pain was back in Sept of last year and infections in November. From what I can find out about vitamin D, fatigue, all over body pain and cancer are all symptoms. Also, I started taking Red Krill oil, it's kind of like fish oil but I have heard many things about it and because of the pain and fatigue and no other help in sight I have tried it. I think it's beginning to help with the fatigue and pain but it could be just the sun or vitamin D but it's worth a try. I have tried and found relief with morphine now that darvocet is off the market. I was on that for a while and it was working.
Please don't give up - they will figure out what is wrong with us. Just like the post I am responding to, if you haven't tried God please do, when you just can't take it any longer he steps in and helps.
God bless and best of luck to all.
I think this is mainly because of poor quality sleep - whenever i don't get enough sleep - i.e. 4hours a night for 3 nights in a row, my whole body starts to ache - but it sort of feels like it is in my bones more than my muscles. WNyway that is how i came to be looking at this site - i was trying to understand why it is that lack of sleep makes your body ache. Soo I suggest that anyone out there who has these systems do everything in there power to insure that the quality of there sleep is as good as they thinkit is - you may have to film yourself or something to see how you sleep. There are things like sleep apnea which cause triedness and could therefore teh aching also.
I have Fibro, neuropathy, and arthritis too, and I have gone to all sorts of doctors, finally I'm going to a fibro clinic and they do physical therapy, massage, and help me manage my medications. Magnesium has help me a lotl I have to take it twice a day I take calcium, vitamin B, vitamin D, niacin, A long with medication of provigal* helps with keeping me awake during the day, I take gabepintin and tianzidine, for nerves and muscles, cymbalta, and other stuff for blook pressure and thyroid. I take a handful of medicine four times a day, and I feel like an old shut in. I am 69 but most people at that age are still going strong.
if your doctor is telling you you are too young .get a second opinion,its clear this doctor soes not believe that fibro is real...there is no age ..I was in my 30 s when diagnosed....its awful and my children (God bless them ) dont understand why mommy cant do things..
I did and the pain meds seem to increase the neck pain intesnsity to a higher level. The stronger the medication the stronger the pain
its not the weight!! Ive been underweight and felt like this at your age. the only time I felt any relief was having weight
I jwouldve demanded evidence seeing what the age guidelines for developing fibromyalgia were
Jeepchick you made me giggle... Im with you on the sports thing...but I get hurt just crossing the room.... about a year ago I tried yoga...slowly on my own at home... i started to feel a little better than my crazy life got the best of me and to make a long story short I quit doing it...now Im again at the height of this pain cycle....after reading this I think I will try again.....I wish you all the best...
OK for one it seems pretty kind to me for all these people who replied to take time outarching of their time of searching for answers to try and help a perfect stranger on a discussion board. So the rudeness is pretty uncalled for and annoying if you ask me! For two most people in such EXCRUCIATING PAIN as you say you are in wouldnt have the care or the energy to argue about who's pain is worse. Seriously "My daddy's stronger than your" I cant even believe im reading this crap on an adult discussion board!
hi laurie can u get red oil from the herbelists as iam also in great pain have had this since i was 18 am now 65 still work but like today am in servia pain all over just a day free would b nice pray to god some thing works
For Original postings, and Jeep girl here... I had the same thing happen for 10 years plus, many doctors, many drugs, LUPUS, plus thyroid, plus this and that and always the pain and migraines are always there now it seems I am allergic to everything... food... eggs, bleach, light, what's next? air? pain killers was the first... so I just live with the pain and it I don't know what makes it happen to start but stress does makes it worst... Western medicine helps only for so long and then doctors get just as frustrated as I am and look at me like it's in my head.... test show it's not there for sure! so... I have treated it with some luck, look into Acupuncture, self hypnosis, bio feedback, any alternative medicine that has reputable background and great reviews... I refuse to be define by this or how I see myself on the mirror... I know the wind hurts, I know shower hurts, I know going down stairs hurt... I know some days I fight the urge to just want to die but to see my 3 year old baby's face smile, how can I leave her behind, how can we give up now when we have made it this far... the mind is powerful enough to kick in those endorphins and seek ways to cope if you just allow it, let the right one in, don't let depression be the comforter of your pain... on good days, write down how good it feels, sip it like the best cup of tea, or glass of wine, remember the sweet smell of your baby or painless hugs of your love one... in my case I go and make non-birth day cakes for my family or Thanks Giving Day in mid freaking August and on a bad day/week damn the dirty laundry and dishes because your very existence is an important part plan of the universal plan, it is not a test, your experience is here now reaching and comforting others such yourself, your family needs you and through you and I we understand pain... mean time, seems like closely related to auto immune disease so research topic... watch your diet, the simple to digest, the easiest to prepare the better for you and your family too... the less anti inflammatory the wonders in will be on your body... take a break from doctors and meds when its ok for you and your doctors is ok for you to do so...
At some point things will be better if you can forget it if you can release it. I know it sound crazy, but I been there and I am still there, just taking one day at a time and learning how to deal with it my on way.
Have you been checked for lyme disease? Mine is in the late stages and the doctor said the only thing now that will help is a PIC and antibotics for 28 days intro.
i HEAR YOU... the pain is awful...to hard to type
has anyone suggested rosethrin intro with pic
Just wanted to tell all you pain sufferers out there that it's not going to last forever.
Soon Almighty God is going to step into the world's affairs and remove pain and suffering for ever.
Next time Jehovah's Witnesses come to your door. Ask them to explain this from the Bible. It's the only permanent answer to our problems.
It really keeps me going and gives me hope.
Rev. Ch.21 v 4.
i,m in the same position.just want to give up.I was in a abusive marriage for 15 years and finally got out but my pain and depresion wont leave me>i cant even keep a job!!
iam 29 and iam havin pain all over my body,dizzy all the time, head aches, since 2 years i went had my blood test done negative idnt nw wat to do if i try to talk abot my pain to anyone they just ignores and think tats its in my head i have 2 kids cant play wit them dnt feel like doin anything always tired sometime i feel wat if i had some chronic diease.
that sounds to me like you have arthritis all over your body im no doctor but i know many of people sufering like you and it is arthritis ur best to go for an M.I.R SCAN because the scat scans dont show right down to the bones definately ask your PG for M.I.R scan from jody
i was told the same thing fibro and psoriactic arthristis! there has to be something out there to help us, this is not a life being in chronic pain! i have no friends as i am so moody, people look at me and say you look fine go get a job, and i say live in my shoes for one day and see if you could go to work! i stay at home all the time i am so depressed as the day wears on the pain gets worse. please if there is help out there please let me know, my email firstname.lastname@example.org
what kind of doctor did you see i didnt just want to see a family doctor, i almost feel like i have the flu from being achey but its not the flu and i am so tired all the time now i am 40 i feel like its in the bones.
I am looking for answers as well. I have been in pain almost all my life and now I am 43 and I cant tolerate it any longer. I would tell your doctor you want pain management or your going to look for a new doctor. What he is doing for you is not helping. I am up to 5 percocet a day but I cannot stand this constant pain and do my work for my job. I used to be a plumber and work my butt off every day, but I have Polands Syndrome and my muscle symetry is off. Whatever is causing this constant pain all over is bad. I found that using ephedrine hcl for asthma makes it worse, alot worse and I still have to take it when its humid out or I cant breathe. If I stop taking it, the pain is not as bad. Are you taking anything that is a bronciodialator? Or like something that has a drying effect on your mouth?
find yourself a doctor that believes in your pain, there are docs out there that have fibro or loved ones living with this condition, at a certain point you must count the cost, is it worth being able to move taking a pill every six hours ? yes it is, i know im physically addicted. it is immpossible physiologically to not excpect addiction every doctor knows this. I will take these meds oxycontin and oxycodone for as long as i am affected by this excrutiating pain, otherwise i will have no quality of life for myself or my family(three boys under three,one boy who is eight)count the cost for yourself, no-one should have to live without pain relief crying themselves to sleep at night unable to do the simplest things like walk and spend time with family. I feel for you, i really do.
someones whos been thru the ringer:) too.
I have been suffering sever pain off and on for 7 years and over this last year it has got to the point that I am stuck in bed for 4 days at a time leading to depression and agoraphobia. I have mild Scoliosis. When I had my first birth it took 13 epidural shots and the could not do. My second birth a csection they tried 20 times and switched to a spinal tape needle. Scraping my spinal area do you fill right or left, right or left 10 times of this tell they where able to hook it. Since the first birth I experienced electric shock shooting through legs. Couldn't walk, sleep at times. After the second birth had the same symptoms 7 years ago for firth birth, 2 years ago second birth Over this last year I have been suffering greatly. Now I have sever days that last 4 and 5 days where I can't even lay on my own body. Fells like my bones are cracking from with in. Shooting pain from legs to arms. My joints fingers, wrist, legs, hips all suffer the same pain now. I have gone to therapist for sever depression. Been told is fibromyalgia by therapist only. The doctors in my small town have told me go home take your depression meds. With no test besides blood. I am in sever pain 70% of the time. I have had to apply for disability, I can't handle working. Never know when my bad days will be. Pain.. I have no leg to stand on for disability, since no proof of pain. Since I have no insurance, little income the doctors think Its not real pain. I have been searching and searching for what might be wrong on line and by chance Arachnoiditis came up after a 6 month search. Could this be, how do I get the doctors to test me to find the cause, and to help!
Tahnnee G. age 26
Hi Heh, that was very good and very true! I have been ill since 2006 and I am now discovering I can't let this pain and illness define me and I can't let it take me out like this...So I am taking it day by day, no future planning and that's okay w/me. If I make it to an event , Awesome, if I don't please accept my apology cuz that's all I have to give at this time...People don't really understand and I forgive them for that because I don't understand what my body is doing either...and I don't address their issues because it is their issue, not mine...I wish for you and the rest of the gang here a little less pain daily and a little more peace!! Thanx
There IS a reason, they (you) just haven't found it yet. Fibro can be from the unknown source BUT it can also be from an injury, old or new, and then go from there. You could be describing the same thing and it looks differently with unexplained continued pain. I have fibro, I did not have an accident, my tests are always normal but I have no nutrients in my body either (IBS and Fibro) and my hair is falling out for "no reason" I have squishy skin for "no reason" and I have many vit deficiencies for "no reason" and chronic pain for "no reason". There IS a reason, a cause and a source, for one or different reasons, Dr's don't know everything though many would like to think they do, so until they find a cause, a million causes, and HOW we all connect with the same symptoms (same disease or different?) then we won't have any real answers.......At 35 I could barely get out of bed. My family, my kids, and my exs family all knew I was "lazy" and "dirty" because I had "no reason" to be so tired and in so much pain. HANG IN THERE ALL OF YOU. WE ARE ALL IN THIS TOGETHER. ~M
I feel so bad for everyone here....how horrible it must be to try to get through the day with such pain. My husband is in this position too, and apparently for no reason. Have any of you looked into parasites and or candida. If you have it for years, it wreaks such havoc and doc's don't even look for it. Just an FYI. Hope this helps. Good luck everyone.
ha people i have the same problem wake up at night hurting so dam bad that its unbearable i have no insurance and am the back bone of the family i guess if i did not work night shift i could not make it that and being the boss were i dont have to do much but getting to the point i can tell you that depression hurts and along with all the other problems that you have can cause a lot of pain such as osteoarthritis and gout and just me ive been injured several times at work and different places but the body will give you more pain if you just set around and do nothing but think about it so take my advice you got to eat right thats a start then do some exercise and if you smoke it can even make you hurt worse im not all the way their yet but im progressing beleive me it really helps sometimes you might even try neurotin it helps give you energy to get you up then you can start doing things then start exerciseing just a little a day then watch what you eat then before you know it your back to your old self hope this helps you but if your in a great state of depression you may need to start takeing some kind of antidepresant with the neurotin and cut back on the pain killers they only make you hurt worse after you take theme for a while
hope you luck in your treatment
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Hi even i faced the same problem,but now iam alright.i would like to give u some tips, please intake few dates in the morning and before u go to sleep take some milk & honey along with padam or and nuts.just take this for 2 weeks u will feel the difference.if you feel its working out u can continue ............just have a try if its works reply me.........
agree with you on the lack of sleep.. I had a problem with body pain for a few years; had tests done and all they could say was it appeared I had tendonitis throughout my body and not getting enough sleep will cause me to have a flare up since your body needs rest in order to repair itself. I had my doubts until I lost 40 lbs, ate healthier and started resting better. The pain went completely away until these last few months after my twins were born. Now I don't get enough sleep and the pain is back :(
for 4 years i too suffer this strange all over pain. i can now barely get out of my bed. the sounds that come out of me, when getting up is scary for my little dog. i don't smoke or drink or have fallen. i just hurt all the time...bad. if i don't take pain meds i would be screaming or maybe crying. my doctor too says this and that. but he doesn't know either. so here is what helping me. NO SUGAR. takes a month. don't worry you can do it. think of every person that pissed you off and tell them. their stuck in your body. yoga! your past is your future. try to surrender to it, not the people. learn to let go and those pains will go with it little by little. spoken from experience. so far some of those pains are gone with that EXPERIENCE. takes time but thats all you have..right?
IF you even think you may have sleep apnea BE CHECKED!! I have it and although I still have pains (I think much of its due to work) I feel more rested than I did before I was diagnosed. Its imperative that you be checked for sleep apnea, as it can kill you! It does major damage to one side of your heart, which can endanger your life. My former managers husband is on disability because of sleep apnea he didn't even know he had, because of the severe heart damage. Sleep apnea causes you to stop breathing in your sleep sometimes dozens or more times a night. This lack of oxygen can also cause poor memory. Look it up on www.sleepapnea.org/learn/sleep-apnea.html - Cached
I believe the reason lack of sleep makes your body ache is because your body is not totally relaxed if your not sleeping, or not sleeping good or enough and if its not relaxed its probably not resting like it needs to. During my sleep study, I only quit breathing 48 times, but that was only during 2 1/2 hours sleep! It was hard to sleep with all the things they hook up to you to monitor everything. The 2nd test was alot better.oh btw, some people quit breathing hundreds of times in a night! good luck with all your physical pains, sleep and other problems. God bless you!
Hi Mark, and everyone else that suffers like I do:
I have this everyday. I feel as if I have the flu but have no fever and my BP is normal. Somedays I sleep for two days straight when this flares up. I'm out here trying to figure out what's wrong with me myself. I just don't know anymore but the pain is so bad I ask GOD to take me ( No I'm not suicidal) but the pain is so bad I don't have any quaility of life. I'm only 48 years old and accomplishments for me is going to the street to check the mail. I walk with a cane, and keep trying to do small baby steps. Every afternoon this starts around 4pm and normally in bed by 6pm depending on the pain wake up around 6-9 am, no symptoms except it feels like my blood hurts. I do get chest pains however they told me I have a condition called Ankylosing Spondilitis which is a form of RA and I've been told it has worked it's way into my chest. I have two buldging discs in my neck, two lower back surgerys but no trama like car accident or anything. I do have the RA/AS but my immune system just cannot handle this. I would really like to know what exactly is going on with me. But wanted to share my thoughts on the sleep part because I have been sleeping more then normal ( normal being about 6-8 hours per night for me). Sorry for the rant but I'm so lost right now looking for answers why I feel like this and how do you tell your doctor??? I'm suffering from severe pain, they ask where I say in my blood??? They look at me like I'm nuts.
When reading all comments and responses, it feels they ALL are decribing JUST PART OF what I have. I am 49, and for the last six years, I've been suffering of sever pain on MY WHOLE Body,(before that it was just mild to regular) from head to toes litterally. Migraines so severe they have even paralyzed temporarily half my body, Fibromyalgia, RA, Carpal Tunnel on Both hands,Hyperlordosis, Bulges in 4 vertebraes, herniated discs, Achalasia, Plantar fibromas(3) in my left foot, very britthe bones on my right foot, I had surgery on both knees (and after only 3 months, they did 8MRI's from head to toes, and found I need surgery Again on my right knee, is over double the size of the left one), Yesterday I have a "Nerve Conduction Test" and I will be having surgery on Both hands, They get Numb and the pain is umbearable, I have to use braces ALL deay and Night, and still the pain don't go away.As I was at the Dr. I showed him that just by the middle toe R-foot,was getting white, I mean really paper white and spreading every day up the leg, also, both my legs were so swollen that not even my sleepers fitted.He send me ASAP to the Hospital, as he thought it might be a blood clot. Even though it was not, it was somethig as bad or worse, they found out it is Cellulitis.
As you alll can see,I REALLY UNDERSTAND PAIN, I got my disability just last May, after 2 years fighting. Also please know,PERCOCET DOES NOT WORK FOR THAT KIND OF PAIN, ask your Dr., (if U have not tried it yet) to prescribe you the Fentanyl Patch, for me it helps A LOT. Also ,get a lot of rest/sleep (if you have problem sleeping also ask your Dr. for some sleeping aid. Check the internet, if you find something, ask your Dr. about it. Remember you are the patient, You are the one in pain, the Dr. is there to cure you or at least help ti ease the pain.
DO NOT BE AFRAID TO ASK YOUR DR. FOR ANY KIND OF MEDICATION IF YOU THINK IT WOULD HELP, AT THE END,HE WILL KNOW IF IT WILL OR NOT help and anyway, you are in such pain anyway... (I fought for over 2 years to get rid of the Percocet because I knew it does not help for the type of pain I suffer, and as you can see, I have a lot going on...no Dr. will take me out of it concerning the outcome,and finally I found a Dr. who told me "Just stop it, cold turkey, you are taking meds that will not allow the side effects of the drop", I did and I am "fine" without it, anyway it was not helping to get rid of any pain AT ALL)
DO NOT MARRY ANY DR.-if he is not constantly testing, and trying new meds, procedures on you and it's just the kind of Dr. who islistening to you "cry & complain" and at the end of the visit just gives you a refill and see you next time....CHANGE THAT DR.ASAP HE IS NOT HELPING.
If you have the chance to go to a Dedicated Pain Management Clinic,PLEASE DO ! I go to one called S.O.A.R.-(Spine Orthopaedics And Rehab) here in Melbourne, Florida, and since I am going there, I FEEL CARED FOR. The quality of Drs. is Incredible, Indescribable. Since day ONE, they have been dedicated to help me get rid of the pain, not to make of me a Savings acct. having me go every month for nothing (That is how I felt with my previous Dr., no tests, referrals... NOTHING).
AND DO NOT EVER EVER EVER FEEL SILLY FOR ASKING QUESTIONS, TELLING SYMPTOMS OR SHARING YOUR CONCERNS- If you do so, It is dangerous for you and means that You do not trust your Dr., (specially if after telling him something a "..Here he(she) comes again" smile shows on the Dr.'s face.)
Please Everyone, not only take care of yourself, have the Dr. do it. He is suppose to be the expert, and that is why he studied Medicine, to save lives, cure and take care of the sick. Also, for me very important, the really most important one(personally and with all the respect we all deserve) Praying every day to be healed, and if that cannot happen, at least allow my day to have tolerance and patience, and ease the pain so I can accmplish some duties in my home. God Bless you all and hopefully my words and suggestions help you to think, analyze and maybe even, change Dr. if necessary. REMEMBER, IS YOUR BODY, YOUR LIFE AND YOUR HAPPINESS THAT IS AT STAKE, DO NOT LEAVE IT AT THE "BUT HE IS SO GOOD WITH ME, AND I'VE BEEN SO MANY YEARS WITH HIM' kind of thinking, and look for a new Dr. , and maybe, most likely...a new Horizon ! Good luck, God Bless and a Really Strong Hug to your heart♥
You are absolutely right Susan. I am looking forward to not suffering anymore and I know you feel the same. We have to deal with what comes our way while we are on this earth. The next time around...will be the best. We can hang in until then and pray for all those who suffer and that they will understand that it is not forever.
you know i have the same pain all through my body..but i also have panic attacks..maybe so do you...and i recently descovered that some random pain all through the body is caused by bad teeth..if you have bad teeth like i do to, that may be..all you can do is talk with a doctor and see maybe if one or both of these things is going on with you thats just if you have bad teeth..if not there are anxiety and panic attacks..hope this helps:))
Hi Jeff, I also have ankylosing spondilitis and had been constantly tired and felt as though I could sleep for days if I didn't drag myself out of bed. It seems to be related to the joints, which then led to almost losing my eyesight in my left eye called Uveitis, because ankylosing spondylitis is an autoimmune disorder, so when the body can't heal the joints, it attacks another part of the body. My shoulder is now frozen up to a certain point. In essence, the body begins to destroy itself, attacking one part of the body when it cannot heal another. So for the eye I had been on steroids for years and had a steriod injection in the eye. After almost going blind, my sight was restored. I recently have begun to feel better and have stopped taking all steroids. I have found that there is no doubt whatsoever that rest is crucial. I still have joint pain, but in my head I say to myself "come on, get up, you can do it" to myself, and slowly stretch myself up, whincing at the pain. Stress was a big factor, I believe. I was under tremendous stress at my job and after the death of both parents. Reading the Bible and praying, and attending a good Bible-believing church helps more than you can imagine because you can find Godly people who can pray for you and keep you up and about, and people you can call for encouragement. I do want to let you know that there is hope! Honestly, it did take years, though. I hurt myself also because when my mother died, I tried to become a vegetarian, but really I just ate junk with no meat (bagels with cream cheese, etc but not much healthy food). So all in all, good sleep on a regular basis, switching to a healthy diet, getting closer to Jesus, reading His Word, getting together with a good, solid Christian prayer group, and setting goals for yourself are all some tips that I can offer.
I find your response amazingly insulting!!! Dont you think after being in pain for years most of us have prayed our asses off?!?!? If it were that simple none of us would be on this blog!
So sorry to hear so many with so much pain, I too have had the same pain. I went to docotor, after doctor from Medical docs, pshyc docs, rumatologist, had cat scans, MRI's, heart strees test, blood test and nothing was found. however I was told I had Fibromyagia, I just had to live with the pain! I read everything I could get my hands on about my pain. I cried for hours and then I decided to try something new!
I changed my diet and added exersise,and strethcing to my daily routine. something I thougt I could never do. I started out slow, just going to the pool and walking with the risistance of the water since I could not swim due to pain. I then cut out all processed foods, then sugar, then I cut out Gluten, I ate organic foods and whole foods, I took vitamine B12, D3, E, Magnisum and Calcium.
I made sure that I slept at least 8 hours every night and if I was not able to get to bed and get the eight hours I rested in a quiet place sometimes my car or in a park, for 15 minutes 2 times a day.
After about a year, I can say I am free of that pain that crippled me, I lost 25lbs and keeping it off, I now do aqua areobics 4 times a week! I believe It is a mind set for some of us, and what we put in our bodies detroys us.
I wish you all the best of health and best in dealing with your pain. Doctors are costly and a waste of time, if you keep getting the same answers all the time and feel no relif just try my plan and you will start to notice a difference in a matter of weeks. good luck!
I too have pain all over my body. It is so bad that when I get up in the am I am limping for hours. I haven't done anything wrong to my body. I WAS a cheerleader in highscool. I am a nurse and worked for a pain mgmt specialist and am really nervous to ask for pain med because I know what those poor people are viewed as. My back, my neck, my arms, my hands and my feet hurt all of the time. Like a bruise all over my body... I just want to know what is going on. Ugh!!
I'd sure like to hear what happens. Thanks Janna
Find another forum to preach, you should be ashamed, these people need REAL answers you lunatic!
Unless healthcare professionals have chronic pain or live with someone chronic pain they do not understand that the pain changes in quality and sevarity from day to day and that's being generous at times it is more like hour to hour. My personal story is that I have had TMJ since I was 2 years old, started getting diagnostic laperoscopies on my abdomen at the age of 15 they still don't know what is causing the pain in my abdomen. I have had both shoulders operated on due to over work (I was a CMT). I've been in 4 MVAs. The doctors just keep running tests, it also doesn't help that I'm allergic 2 just about everything. Most nights I sleep ok, alot of times sleep is my bodies best defense to the pain.
Hi Guys.... I can relate to all of you. My all over pain started about 6 months ago. I too, had surgery 10 months ago...not sure if its related. Like Jeannie.... I am trying hard to make my lifestyle better. I am walking 2 miles a day and lifting weights. I am juicing at least twice a day and cleaning up my diet. I just turned 54 and I guess I 'thought' this was going to be my life from here on in and it is SO depressing. I am painfree while walking, but at night in bed... there is no comfort. Just keep forging ahead...............
I can relate to what many people are describing here at this site. I was involved in an MVA two years ago. My spine in the lower area of my back feels like it was pushed in due to the accident. I have a cervical disc herniation and multiple bulging discs since this has happened. I have all over chronic muscular pain, an all over burning sensation and sharp shooting pains that are horrendous that pop up randomly such as in my shoulders, legs, toes, hands etc. I have had numerous tests, have seen endless doctors. Physical therapy caused more pain so I had to stop. I now see a pain management doctor who uses pain meds to treat my symptoms, but I am so sedated that I can hardly think straight. I have to sleep every few hours during the day because I am exhausted. I can only walk 20 minutes or so with a cane and sitting up straight becomes too painful after the same amount of time. Moving around longer than 20-30 minutes becomes so exhausting and painful that I have to lie down for an hour or two just to reduce the tingling & pain to a tolerable level such as 5 out of 10. My spirit is breaking and I feel like noone understands what I am going through. It is comforting to know I'm not alone. If this is the way I'm going to have to live my life out with suffering at this level each and everyday, I am going to need a lot of people around me that do understand what I'm saying and going through. This site is a God send! Thank you for listening to my story. It really helps to know I'm not alone.
Tammie: Many times I have thought that all doctors should be required to go through pain training. They should somehow be put in the extreme pain we all feel so they could understand what their patients are going through. I don't know how this would be accomplished, but I do wish they could all experience severe pain all over their bodies for at least a several month time span just to get a "feel" for it. It wouldn't be as bad as what we all feel because they would know their pain would go away at the end of the training, and ours goes on forever, so they wouldn't experience all the hopelessness, frustration and depression we get after years of pain, but maybe they'd get a clue.
I went through all the wondering about the pain I had about fifteen years ago and like many of you, I was diagnosed with Fibromyalgia. My pain was horrific and seemed to move from place to place in my body but mostly in my big muscles, I also had a lot of burning in my hands and on the bottoms of my feet as well as brain fog and constant fatigue. I just felt like a had an incorrect diagnosis so pushed forward seeing doctor after doctor and after three long years I was diagnosed with PORPHYRIA. Porphyria has many of the same symptoms as Fibro. Porphyria is a blood disease in which there is a missing enzyme and the reason your entire body aches is because the blood travels to every part of your body. It also affects your nerve endings and causes painful neuropathy. Porphyria is a disease that is typically latent until it somehow becomes activated, mine was activated after I had surgery. This can happen because of hormonal changes, after surgery or by being exposed to something in the enviroment that can trigger the disease. Every Porphyria patient has their own triggers mine are chemicals in cleaning compounds, oil based products, gasoline and other fuels, the chemicals in a new car, chemicals in carpet, many foods and the list goes on, but you get the idea. Once I was diagnosed and begin to identify triggers and eliminate them I started to feel better. Now I have episodes from time to time but they rarely last more than a couple of weeks. The best Doctors to see to talk about this possibility are Neurologists and Hemetologists.
Unfortunately there are a lot of Doctors that don't know anything about the disease and many more that are reluctant to consider you may have a rare disease. As with many medical conditions you have to keep searching until you find someone willing to listen.
This is IMPORTANT there are many medications that Porphyria patients cannot take including many frequently prescribed antibiodics, pain medications and anesthetics. I see many of you may be taking medications that, if you have porphyria, may make matters worse. Two very important things DO NOT SMOKE OR DRINK ALCOHOL.
There is no medication to take for Porphyria you have to learn to manage the disease. For more information you can go the website for the American Porphyria Foundation or Google it.
I hope this information may give some of you another possibility to pursue in finding out what is wrong and to live ultimately live a more healthy live.
I FOUND THIS WEBSITE THIS MORNING, AND READ YOUR POST. I'M WONDERING IF YOU KNOW ANY MORE ABOUT YOUR CONDITION, AND ARE DOING BETTER ???
I HAVE LIVED IN HORRIBLE BLISTERY, ELECTRIC NERVE PAIN FOR OVER 7 YEARS, AND HAVE SEVERAL DISORDERS AS THE ROOT CAUSES OF IT ALL.
MY LIFE HAS BEEN A NIGHTMARE OF UNGODLY PAIN - BUT I FINALLY HAVE MANY DIFFERENT THERAPIES THAT HELP 80% OF THE TIME!
I HAVE SLE LUPUS, WITH SMALL FIBER NEUROPATHY IN MY HANDS, ARMS, FEET, AND LEGS, LUPUS ARTHRITIS, INTERSTITAL CYSTITIS OF THE BLADDER, PAIN PREDOMINATE IRRITABLE BOWEL, AND L4-L5 DISC HERNIATION.
A MULTIDISCIPLINARY APPROACH TO TREATMENT IS CRUCIAL IN GETTING BETTER, AND THE RIGHT DOCTORS, AND MEDICINES/ THERAPIES.
MY HEART WENT OUT TO YOU AS SOON AS I READ YOUR MESSAGE. NOTHING IS MORE DIFFICULT IN LIFE THAN UNBEARABLE, ALL OVER PAIN. BUT THERE IS HOPE,
I CAN LET YOU KNOW WHAT I'VE FOUND, AND MY DR.'S HAVE DONE TO HELP ME, I KNOW I CAN HELP YOU. :)
I'M A MOM WITH 2 DAUGHTERS, AND MY HUSBAND IS IN THE AIR FORCE, SO WE MOVE ALL THE TIME - SO I'VE HAD TO SEE A LOT OF DR'S - A HUGE PAIN TO START OVER WITH MY MED. CASE EVERY TIME WE MOVE - BUT IT HELPED ME TO FINALLY FIND DECENT DR.S
I CHECK MY E-MAIL EVERY FEW DAYS - SO IF YOU WAN'T TO LEAVE ME A MESSAGE, I'LL GET IT RIGHT AWAY.
MY PRAYERS ARE WITH YOU, :)
THIS MESSAGE IS FOR ALL READERS WHO HURT FROM HEAD TO TOE !
MY POSTING IS DIRECTLY ABOVE ( ROBERTA - ( WRITTEN TO SARAH )
MY HEART GOES OUT TO YOU ALL ! THERE IS NOTHING MORE DIFFICULT TO GO THROUGH IN LIFE THAN CONSTANT, EXCRUCIATING PAIN. IT TRUELY AFFECTS EVERY OTHER ASPECT IN YOUR LIFE. BUT, YOU HAVE TO KEEP FIGHTING, HOPING, SEARCHING FOR THE ANSWERS!
I'M VERY INTERESTED IF ANYONE OUT THERE HAS THE SAME PROGRESSION OF THE SAME SYMPTOMS AS ME ???
AND I HOPE THAT READING MY POSTING HERE MAY HELP SOME OF YOU FIND MORE ANSWERS TO WHAT YOUR PAIN IS FROM, AND TO FIND THE RIGHT DOCTORS, WHO WILL LESSEN YOUR PAIN ! :)
I NEVER IMAGINED THAT ALL OF THIS WOULD HAPPEN TO ME. :( I GREW UP IN COLORADO, AND LOVED HIKING, BIKING,WORKING OUT, AND JUST BEING OUT IN NATURE. GOT MARRIED TO MY SWEETIE - 2 LOVELY GIRLS. I WAS ALWAYS HAPPY, RELAXED PERSON, A VERY HEALTHY EATER, AND HAD PLENTY OF STRENGTH & ENERGY. SO FOR ME - IT WAS LUPUS - WHICH I CARRY THE GENE FOR, AND RIGHT AT 7 MONTHS IN MY 2ND PREGNANCY, MY HEALTH WENT. I FIRST BEGAN TO GET EXTREMELY NAUSEATED, AN AWFUL COLIKY CRAMPING IN MY KIDNEY AREA, A "ALLERGY-LIKE-DIZZY" FEELING IN MY EYES, SO SO TIRED, AND LIKE SOMETHING WAS "ATTACKING" MY IMMUNE SYSTEM. MILD HAIR LOSS, FACE & CHEST RASH, NOSE AND MOUTH SORES, MY FEET BEGAN TO ACHE ALL THE TIME ( BEGINNINGS OF NEUROPATHY ), DRS SAID - IT WAS ALL JUST PART OF THE PREGNANCY, ALL OF IT JUST BECAME WORSE OVER THE MONTHS, AND THEN TERRIBLE ARTHRITIS, IC OF THE BLADDER, AND THE HORRIBLE NEUROPATHY.
I ENDED UP JUST EXISTING IN A LIVING HE_ _ OF PAIN, LITERALLY CURLED UP IN MY BED FOR 4 1/2 YEARS !!! THE DR'S WERE WORTHLESS - AND WE KEPT WAITING FOR OUR NEXT MOVE- HOPING THAT WE WOULD FIND BETTER DR'S. THEN WE GOT ON A LONG WAIT LIST FOR THE MAYO CLINIC IN OHIO. BUT THEN HAD TO MOVE AGAIN.
WELL- I FINALLY FOUND A FANTASTIC PAIN DR. WHO SAID THAT SEVERE CHRONIC PAIN MUST, MUST, MUST BE TREATED WITH THE RIGHT COMBINATION OF MEDICINE!!! IT IS SUPER IMPORTANT THAT THE RIGHT COMBINATION IS USED - OR THE MAIN PAIN MEDICINE WILL NOT BE ENOUGH TO HELP!!! :)
HE ALSO TOLD ME TO ALWAYS GET PLENTY OF SLEEP, AND PERFECT SLEEP SCHEDULE HAS A HUGE ROLE IN PAIN !!! YOU MUST BE CONSISTENT !! LOTS OF VITAMIN D, CALCIUM W/ VIT D AND MAGNESIUM, VIT C.
HE HELPED ME SO MUCH FROM MY VERY FIRST APPOINTMENT ON!!! I LOVE MY PAIN DR., I HAVE A LIFE AGAIN BECAUSE OF HIM !!! HE HAS ME TAKE : LAMECTAL = FOR NERVE PAIN , ZANAFLEX = AN AMAZING MUSCLE RELAXANT, PROVIGIL = TO KEEP ME AWAKE & ABLE TO DO THINGS!, AND OPANA ER = SLOW RELEASE MORPHINE.... THIS COMBINATION HAS GIVEN ME MY LIFE BACK!!!! AND MY FAMILY TOO !
HERE ARE SOME VERY IMPORTANT THINGS TO DO, AS YOUR BODY ALLOWS YOU TO, THAT IS......
IT'S VERY HARD TO TRY TO DO ALL OF THESE THINGS WHEN IN TERRIBLE SUFFERING, AND BEDRIDDEN. I COULD BARELY FEED MYSELF, OR BRUSH MY TEETH. BUT, WE TRY OUR BEST.
IT'S SUPER IMPORTANT TO GET PLENTY OF FRUITS, VEGETABLES, WHOLE GRAINS, AND LOTS OF H2O. AVOID SUGAR, FAT, CHEMICAL ADDITIVES,TOO MANY ACIDS, TOO MUCH DAIRY, EAT FOODS THAT REDUCE INFLAMMATION.
LONG, WARM- HOT BATHS. MASSAGE MUSCLES- JOINTS CONSTANTLY, MAGNETIC WRAPS ( ANKLE WRAPS, KNEE, BACK LUMBAR SUPPORT WRAP/ BELT, ETC.TCHING, LIGHT WALKING, WATER THERAPY - BATHS, MASSAGES, ETC.AND THERAPY FOR HANDS/ FEET.
I HAVE SLE LUPUS, ARTHRITIS, PAINFUL SMALL-FIBER POLYNEUROPATHY , IC OF THE BLADDER, AND L4-L6 DISC HERNIATION.
AFTER 11 YEARS OF SUFFERING, ( 7 OF WHICH WERE A LIVING HE_ _ ), I'M FINALLY GETTING HELP! MY PAIN IS LITERALLY THROUGHOUT MY ENTIRE BODY ;I HAVE SEVERE SMALL-FIBER NEUROPATHY IN MY HANDS, ARMS, FEET, LEGS, BLADDER, COLON, AND BACK. IT IS LIKE BEING HOOKED UP TO A MILLION TINY WIRES THAT SEND A CONSTANT CURRENT OF BLISTERY-ELECTRIC LIGHTENING THROUGHOUT MY BODY. IT IS ALSO A VERY HARSH ACHING, AND BURNING. MY HANDS AND FEET GET VERY RED, HOT TO THE TOUCH, AND VERY PAINFUL BURNING.
OH, NO! I JUST REALIZED - MY PARAGRAPHS ARE OUT OF ORDER IN MY STORY !!! :(
I HAVE TO GO FOR NOW, BUT WILL WRAP IT UP IN A FEW DAYS. MY HEART GOES OUT TO ALL OF YOU - I AM SO, SO SAD THAT ANYONE HAS TO EVER SUFFER. BUT I PROMISE YOU - THERE ARE THINGS THAT DO HELP A LOT !!!! I'LL CONTINUE THIS IN A FEW DAYS, THEN I'LL KEEP MY POSTINGS SHORT AFTER THAT. I JUST HAVE BEEN THROUGH A LOT - AND HOPE THAT MAYBE SOME THINGS I'VE LEARNED ABOUT MEDICINES, AND SYMPTOMS/ DISORDERS, AND TREATMENTS COULD HELP SOMEONE ELSE BECOME IN A LOT LESS PAIN.!!! :)
HOPE YOU HAVE A PAIN-FREE DAY!
I have the same pain as described herein. I have been in pain most of my life, but the past two years I feel like I am gonna die. Sometimes I wonder how I can make it from day to day. I try not to get depressed from all the pain. I take several meds and have been diagnoised with bones fused together in my neck, herniated/buldging disks in my back, bone degenerative disease, fibro, arthritis, a node on one of my discs, recess stenoisis on my right side. I am a 19 year breast cancer survivor. I have had MRIs, bone density tests, and neuclear bone scans (one 19 years ago where they found activity in my shoulders); and one about a week ago where they found lots more activity in my body. The pain has taken control of my life. My bones pop all the time and seems to be getting worse. I just started taking 70 mg Max dose of fosomax per week to try and rebuild my bones. I also take 1600 mg and drink a glass of milk each day. Doing clothes, housekeeping, and everything seems so exhausting and hard to do. I have always been a real go-geter but I just can not not it any more. My blood work always comes back fine. I am very hypoglysemic and can never be without a blood fix. To make matters worst when my employer found out my exact condition they eliminated my position. I lost my retirement and insurance and my focus. I have not worked since February of 2009. I want to try and be positive but am so close to just giving up. I went to the doctor last week and she said that I may have to get ear plugs because it looks like my ear drums have ruptured somewhere along with way. My eyesight is not what is used to be. I have knee and back braces. The back brace causes my kidneys to bruise and hurt, but it does stabilize my spine when I walk. I find it hard to wear it more because I already had a naval hernia and the back brace caused me to get another hernia above where the brace velcro closes in the front. I had a hystorectomery in 2006 and my body immediately got worse and I do not know what to do. The vitamin D makes my bones not pop as much. I could just be laying there and my bones would pop without me even moving. I have never seen anything like it in my life. Last week my thumb on my left hand started burning below the last knuckle. I know that was from the fibro., but have not experienced that much burn before. It felt just like a fire under my finger. God Bless this site and these people, and Dear God Please Please Please help me as I do not seem to be able to help myself anylonger. I want to live, I want to share my life with my husband, I want to cherish memories from my twin girls, I want to enjoy my Mother and GrandMother and My GrandChildren, and I want to be a blessing to others. I want to understand why we are hurting so much and what caused it. Sugarfoot444@yahoo.com
Reading your note is like reading my life story. I was diagnosed 17 years ago with sle and neuropathy. I have interstitial cystitis, arthritis, disc and spine issues (need back surgery). I have other issues but the one thing that is so dibilitating is the neuropathy. It is excrutiating and after 17 years I am so exhausted. I think that it is so cruel to have to endure so much pain 24 hours a day. For the first couple of years the issue was lupus but now keep it in under control. A 12 pack of prednisone pretty much keeps that in check. Up until about 18 months or so I took 900 mg. of neurontin and the pain level was more manageable. For some reason the nerve pain is now excrutiating. I never quite could find the words to explaine how painful it is. You described it better than I ever have. Your description of the pain is so true. I have moved in those 17 years and I have been to many specialists. They all pretty much came up with the same conclusion as your doctors. I am now taking the max dose of neurontin 3600 mg. a day and vicoden. I still can feel the pain. Yesterday I went to a new neurologist and he told me that I didn't have neuropathy (I was shocked). All these years I have been told it is neuropathy. He told me it can't be neuropathy because you can't have neuropathy all over your body. Just wondering what your doctor's take is on that. Thank you for posting your story. It has helped me. I have never spoken to anyone that has this dreadful desease. Thank You, Judy
I'm so sorry to hear that you hurt so much like I do. :( It truely is a nightmare! BUT.... There IS much less Painful days ahead for YOU! :)
I could write a book about my 12+ year battle with SLE Lupus, I.C. of the Bladder, arthritis, and ALLover small fiber Neuropathy-I have lived with so many terrible Lupus flares, severe pain in all of my body organs; joints that felt like I had bone cancer- as well as the arthritis, and the horrific neuropathy. But- I am so much better -All of the pain, and disease is still there- Nothing is cured YET- BUT.....I have pain meds that actually work, and new treatments that are working!!!! NOW I am going to undergo more therapies lessen a lot of my pain, for good!!!! They will take time, and many Dr. visits, but it's worth it. :)
NEVER - EVER -GIVE -UP!!!
First of all- whatever Dr. told you that a person cannot have neuropathy all over is very incorrect- * Polyneuropathy * is is all 4 limbs (poly- means 4 ), and yes many people with neuropathy only have a bit of "tingling" or mild numbness in one area- like a foot, or a hand. There is large fiber neuropathy, small-fiber neuropathy, or a mix of both. When large fiber nerves are abnormal, inflamed, or damaged- they cause a lack of feeling = numbness It can be mild to severe- depending on the type disease, and the severity of the disease. There are many types of neuropathy, and many different types of disorders that can cause neuropathy. It is one of the most difficult disorder to manage, especially if severe pain, weakness, and/or numbness are involved.
Small fiber neuropathy is when the small nerve-fibers are being damaged, and/or inflamed, and when these nerves are damaged- they constantly RADIATE out PAIN SIGNALS , and DO NOT STOP!!!! These small-fiber sensory nerves are in our bodies partly to do just that- SENSE- feel. We couldn't feel without them. Feel a tickle, an itch, feel soft grass under our feet. When we stub our toe, for example, those sensory nerve fiber cells radiate out a pain signal to the brain- in lightening speed time- and we know it the second that it happens. But in damaged, abnormal nerves the cells don't do anything with that signal (large-fiber involvement- numbness), and in abnormal small-fiber nerves, the cells radiate out pain signals even though there is nothing there that is causing them to react that way :( Normal fibers only do this when there is a true stimulus that causes pain, and they have an automatic "on/ off switch ".
*You need to find a different neurologist if he is not willing to get you a skin-punch biopsy - that will show if you have small-fiber neuropathy. It simple, 100% reliable test called a skin-punch-biopsy, or skin biopsy. It is 90% painless, and VERY IMPORTANT to have done. Then NO ONE can tell you that you don't have painful small-fiber neuropathy!! It is usually done by a dermatologist. A neurologist, general provider, or a podiatrist can refer you. There is another test that checks for nerve damage- but it shows very little SMALL-fiber involvement- and it is PAINFUL and time-consuming nerve-conductivity test, ( I had three of them done before- and they were Totally uneccessary!!! Nerve conductivity tests are needed when there's: loss of feeling,coordination,muscle weakness,etc. If they want you to do this test - I would insist on the skin biopsy first!
I cannot even begin to tell you how many worthless, WORTHLESS Dr.s I've suffered going to ALL these years :( No one making a bit of difference, as Ijust kept getting sicker, and sicker, suffering more, and more. You MUST HAVE LOTS OF KNOWLEDGE and LOTS OF GREAT Dr.'s. LET YOUR MAIN Dr. know this- and have a loved one, friend, neighbor with you whenever possible!!! They will be more helpful,more willing to do what you ask them to. SO MANY Dr.s JUST DO NOT CARE ENOUGH, or KNOW ENOUGH to help any of their more difficult cases- LUPUS, FIBRO, RSD, etc.
I , HAVE HELPED ME MORE THAN ANYONE !!! I was so desperate, I started to research thousands of hours on the internet, and each time I figured it out what was wrong- I would have to go back in to these dr.'s and ask if I could get this lab, test, treatment, referral, or try this type of medicine ! :( Thanks to so many LAZY dr.s, I'm way worse than I would have been had I found really GOOD dr.s sooner!
A GREAT Dr. = MUST BE CARING and INVOLVED, KNOWLEDGEABLE, AND VERY UNLAZY, MOTIVATED.
I live in 80% less pain 70%+ of the time now, for 3 reasons - I keep trying, I've learned everything I possibly can about my diseases & about severe chronic pain, and I finally see the right type of Dr.'s, with the right kind of personalities, and they KNOW HOW to treat my diseases PROPERLY- with the right medicines, and the right therapies. If not for all of these things- I would sSTILL be curled up in a little ball in my bed every single day, unable to escape the constant, Horrific pain that was literally throughout my body.
If I were in charge of your care- I would first ask you to find a GREAT Podiatrist who treats painful feet and legs- from neuropathy, arthritis, and Lupus.
And when you call to set up the appointment, ask the nurse if the Dr. ever sends any of his patients to dermatology for a hole punch skin biopsy to look for small fiber neuropathy. If they don't do this- then, ask your regular Dr. to refer you to a dermatologist that does this type of biopsy! You can Google it on Google- and it explains the purpose for the biopsy, and how simple it is. It is just - numbing the skin in 3 tiny areas of the leg ( outer calf, outer knee, and outer thigh), the tiniest piece of skin is taken of w/ a special tool "hole-punch", it is super fast- and HONESTLY 90% painless! :)
You also need to tell your Dr. how bad the pain is- describe it like I did, write down a daily pain & activity journal for a week or so - and bring it in to them, tell them how tired you are of suffering, that your quality of life is poor, and that you are looking for HELP!!! That IS their JOB!
You must have several Dr.s managing your health: Main Provider, Rheumatologist- LUPUS, Neurologist, Podiatrist, Pain Dr. ( and a VERY,VERY GOOD ONE), and for a short time an orthopedic surgeon ( 2-4 visits only ), and a dermatologist ( 1-2 visits only).
I'm sorry for getting into so much detail, I just want to help you as much as I can. First - tell me where each area is with nerve-like pain ( the blistery, bare-wire, electric nerve pain )... does it feel like it's just on the surface skin layers? Or deeper, in the soft-tissue?
Do you have joint pain, separate from the nerve pain? If so, which joints?Describe the pain.
Then do the same with your muscles, and any "body organ" areas as well, (like the bladder, colon, etc.).
I will write some more to you tomorrow. Just know that I do think I can help you- I think that the combination of medicines that work for me, and some of the therapies I use WILL work for you too! :)
Take care, you're in my prayers xoxoxo!
I'm just wondering if you ever got my two e-mail's I wrote to you??? I sure hope so. Please let me know. I hope you are feeling good today! :)
I did get your e-mails. I wrote a long e-mail, then discovered I forgot my password. I decided to open an account for my husband and use it to e-mail you. Thank you so much for your help. I will e-mail you tomorrow when I have more time. Hopefully, with your suggestions, I will get some answers to some long awaited questions. Talk to you tomorrow.
I'll check for your e-mail to me on Friday. :)
I am going to ask for a hole punch skin biopsy. I have already had a nerve conductive study done. It did show nerve damage in my arms but the weird thing is that does not hurt any more than my pain all over. Do you mind me asking who your pain doctor is? I am sure he is not here in South Carolina but maybe he would be a start. I am also going to ask my doctor to send me to the pain clinic. Do you know much about a neurotransmitter in the spine? It seems to me if a tens unit works why can't they have something on the spine that does the same thing? I am surviving right now on vicoden but I know that is not going to last forever. Hope you are doing well.
Hi Again Roberta,
I was reading your e-mail to one of your friends. Do you have a neurotransmitter in your spine? How did they put it in and how does it work?
I live in Oklahoma, and Dr. Micheal Schwartz is my pain doc. He's brilliant, and very nice. The Opana ER is far superior to Vicoden, and works on pain in a totally different way. Also all the staff at my pain Dr. say that being on narcotics does not make the pain threshold weaken over time - that chronic pain can worsen over time in some people, regardless of whether or not they are on pain medication. I totally agree - my pain is so horrible, underneath my pain meds, and was horrible before I was even on pain medications.
As far as the neurostimulator - I have one by St. Jude - the EON mini. It's the smallest one. I'm a petite person, and it doesn't show. You can find their website online: Go to Google search window, and type in: St. Jude Eon rechargeable neurostimulator. That will bring up a few St. Jude links. My Dr. said that a neurostimulator is much better than a TENS unit, and works differently.
They do a trial first (outside the body) to see how you like it, and if you will benefit from it enough to get a permanent one. I've had mine for 1 month, and I LOVE mine! It's helping so much for my arms, legs, hands, feet and bladder, but my discs in my spine still hurt, so he's going to see if the leads can be adjusted to alleviate my disc pain. Also my lower back is still sore from the surgery- but that's normal,especially since I'm such a small, thin person. I just need more time to heal. My appointment is this Thursday - so I'll let you know what he says, if you e-mail me back.
It's wise that you're going to ask for a pian doc, and to get the biopsy done. Being proactive when you're in so much pain is so hard to do - but it is VERY much worth it ! :)
Please keep in touch, and let me know how things are going. You are in my prayers,
Hi Roberta, I will ask my doc about the meds, the skin punch biopsy, and especially a neurotransmitter. I did find their website and it has helped many people with their pain. Did you get a hard time getting the transmitter or did they agree with no problem? One question I have is what percentage of your pain would your transmitter take care of without your meds? I feel a sense of hope thanks to you. I really didn't want to go on. There is no life when there is so much suffering and I don't think I can fake it any more. My close friends and family know but I feel I have to try to put on a brave face. I just can't anymore. Seventeen years is a long time. I do think that when there is a complaint about all over body pain people are suspect because they don't understand (including doctors). As sorry as I am about you and all the other's pain, it is so good to know that I am not alone. Pain leads to depression and depression is a very dark, lonely place to be. It is the first time I have hope. Hope you have a good week and I will let you know how my doctor's appointment goes on Friday. Take Care and Thanks, Judy
Thank you for your kind words, it means a lot! I've asked for a trial neurostim. six times ( from six Dr.s ), before I found the right Dr. - We move around a lot, being military, so that didn't help the matter. But what really made the difference in finally getting to do the trial was - I went to a great podiatrist - and he deals with nerve pain in the feet and legs all the time - and he just REALLY cared about my situation. That is why I finally got the trial. He referred me to an Orthopedic spine surgeon - who gave me a solid YES! Both of them thought that it was terrible that I went to so many different Dr's asking if I could PLEASE try steroid and alcohol injections in my feet, nerve decompression neurolysis, and a trial neurostim, and every time the Dr's would say, "No, none of those treatments would help your pain". Both of my new Dr's completely disagreed, and said, "That's RIDICULOUS!! THIS is what we DO!!!
If you get any resistance, remind your Dr. what you have, how nothing has helped at all, and that you DESERVE the chance to at least have the trial..... that it is worth trying, especially when nothing else is working.
After you get the trial, you will know within a few days whether or not the real one would help you or not. If the trial one takes away 50% or more of your pain, then the trial was considered a success, and your insurance will allow you to get the real one. Many people can cut their meds down to half. My pain is so severe - I don't know yet - maybe %25 eventually?
Yes, many Dr's don't understand pain, that's why seeing a really GOOD pain doc is so important, having a solid medical record that's organized, with as many tests, and labs that can show proof of your pain. If you have a lot of pain in your feet, try to get a podiatrist!
With disorders like fibromyalgia, for example, there is very little proof right now- other than the tender point criteria, and sometimes the way the muscles feel hard to the touch. NOW Dr's know that a person CAN have all over neuropathy with Fibro, and Lupus. Both have been recently added to the disease criteria and symptoms list. Just get that biopsy done ASAP, as it will really help your case. Also accurately describing your pain, how it feels, where it is, what makes it worse, better, and how it affects your daily tasks is very important to get across to them. Also taking a supportive person with you to your appointment can help.
Sorry that I write so much, but living with pain and treating it is so complicated, and maybe what has helped me will help others. Keep trying, most every problem in life has a solution, some just take a lot of work to fix!
I'll be praying for you. E-mail me anytime! :)
(I'll try to keep my responses shorter).
Thank you Roberta for all your feed back. I am heading to the Doctor today and doing blood-work. Everything will probably say normal and I will be back to square one. I've tried to tell Doctors in the past about my pain but they didn't listen well. I used to always be active but the pain has gotten so bad I do very little now. My husband likes to travel and I just don't feel like it. I have pain from head to toe and can barely drag myself out of bed in the morning. I will continue to read this site to see if anyone has gotten any help. I don't trust the doctors much, they look at you as if you are just lazy because usually the test come out OK. God Bless each and everyone of you. Betty
It is so frustrating to find the answers to WHY we are hurting, and you're right, many times lab tests don't reveal anything, or just a small part of what is happening. I would see if your Dr. can run a full hormone workup, an ana titer test, lyme disease, and do a fibromyalgia tender point test. If he is willing to send you to a rheumatologist or pain Dr. who can do further testing to rule out/ diagnose for fibro, lymes disease, arthritis, and sle lupus. I'm not saying you have any of these - but they need to be considered.
Also-It's extremely important that you are taking very good care of YOU. This is a list my pain Dr. gave me- and they are essential to managing pain: TRY to get plenty of sleep - same time to bed/ waking up, nap when necessary. Lots of soft comfy pillows, soaking in baths, mild swimming, massage, being in nature, praying, reading- or as many things that YOU love to do that helps you relax, and keeps you upbeat.
Try your best to not internalize the stressful things in life, and feel proud of yourself for doing your best. It's not your fault that some days you may not be able to do what you can on a good day. Also PACE yourself. My pain Dr. says this is #1 with pain. If you do all you can when not hurting - it will cause pain, or make the next painful flare worse. It is very true.
Also, try LIQUID vitamins, especially D, calcium, magnesium, c, and B vitamin complex. Liquid is much better absorbed, and much easier on the g.i.system, and bladder. Do your best to eat lots of whole grain, lots of fresh fruits and vegetables, plenty of H2O, herbal tea, mineral water, etc.
I know that you probably already do most of these things already, but just wanted to stress how important it is.
ALso - let your Dr. know that you do all of these things, and that you still have pain. THIS will show them that you're NOT lazy, and that you aren't kidding around - that something's wrong!! I wish I could offer more advice - you could look over my other posts I've written about what I've been through, and what has finally helped improve my quality of life. One final thing that will help you get the right help from your Dr's is to keep a pain journal, and bring a short sample of it to her/ him, and visually show them where you hurt, what the pain feels like, and how it affects your life, and those you love. Keep praying for guidence, and being proactive in your medical care.
Please write again, if you have any ?'s, you'll be in my prayers, Bettie. :)
Thanks Roberta, All your advice is really good and I do a lot of what you say & will try and do more. The Doc just called & all my tests that she did yesterday came back normal. (who would have guessed)! I have an appointment today at 1:00 to get a peripheral Arterial Venous test, and May 11th for an EMG upper & lower.
I have an appointment on April 20th to see a Rheumatologist whom I've seen once before. My GP who is also an internist; gave me samples of Cymbalta 30 mg. to try until I see the Rheumatologist. I also take a Loratab twice a day that my orthopedic doctor gave me for the awlful pain in my neck. This kind of takes the edge off the pain but doesn't stop it. Anyway on my chart from the Rheumatologist that came back to my GP said she thought (the Rheumatologist)that I have fibromyalgia. I have been going to different doctors over the years to no avail. I have just quit complaining and tried to get on with my life. It is just not that easy to do when you are in so much pain. I think all my problems started when I took Statin Drugs for Cholesterol, they made my body hurt. Does anyone know if any research has ever been done on statins to see if they could be some of the cause of fibromyalia pain? Just curious of how many on this site has taken or do take statins. I also took a prescription of Levaquin for bronchitis and on the 8th day of taking them I could hardly crawl out of bed. I thew the rest in the trash and put on my chart to never give them to me again.I hope you don't think I am rambling but it is all just so frustrating with pain. I am so glad I found this site and know that I am not alone. I really don't think anyone realizes unless they have experienced such pain. I have always been so active and I still manage to do line dancing once a week. Sometimes it is really hard but I refuse to give it up. Maybe I am on the right track now with seeing the Rheumatologist. I will let you all know. God Bless each and everyone of you that are in Pain. I try to remember that if God leads you to it he will get you through it. Roberta, again thank you for all your great advice. To everyone on this site: just talking to each other can bring hope. What one learns can help another in their quest for pain relief. Bless you all, Bettie
I don't think most meds would cause fibro/ or other permanent pain disorders, unless taken for a very long time, but everyone is different. I know that with all I have wrong with me - I've had to try a lot of meds- and had only small side effects, other than Fossamax, which caused my arthritis to be even more severe, but it went away immediately. Did the pain begin exactly at that time, and never go away??? If so, maybe it was the cause, or triggered the disorder ??? If you think this was the main cause, maybe a homeopathic toxin- cleansing treatment may help.
It's wise that you're seeing a Rheumatologist, and I would try to get a good pain doctor. Finding the RIGHT pain doc, is why I FINALLY live in a lot less pain. I still get a monthly flare, for some reason, my hormone levels of estrogen, and testosterone are almost zero, so were going to try natural hormones. Every few weeks I go from living in *0% less pain- to horriffic, allover pain like I used to be ALL the time for over 5 years, severely bedridden 90% of the time. I've come so far - through sheer determination to not live that way forever. I haunderstand so very well what you're going through. You are definatly proactive, and it will pay off. You can be in less pain, and have a better quality of life again. JUST STRESS to your docs that until they figure out what is wrong, they TREAT YOUR PAIN NOW, you hurt too much, and have SUFFERED ENOUGH. Insist on a pain specialist NOW. Have your husband, or other support person go to the appointment - if they aren't helping/ listening to what you are needing.
I don't care what anyone says about pain meds - I have a much more functional life because of them, they are meds which don't harm any organs. I can actually walk again ! I can use my arms, legs, and my hands and feet again!! I can spend more time with my family, feed myself again, prepare food for my girls, and husband, drive, take a short walk. I have a LIFE again 80% of the time, and will get even better - hormones.
SO..... KEEP ALL of your faith, persistance, proactive intelligence, and lots of GUMPTION!!! - You will get much better !
PLEASE, keep me posted, you're in my prayers,
Hello, This is for Roberta and Melinda because I feel ur pain and I am in the same boat. The boat is really rocking. I am so sad and depressed @ my pain also and the docs just don't get it. I go in and have been to a few just to end up nowhere. I have been dx with: Cervical,Lumbar & Hip/Joint DDD, Spinal Stenosis, Myofascial pain sydrome, Spondylosis, Fibromalgia(all 18 tender points), CM(Chiari Malformation), Venous Angioma(in which worries me into turning into a Caverness Malformation),but they said I was probably born with it, but why does it hurt so bad at the base of my neck...not to speak of the pain from head to toe. I have this pulling muscle pain, weakness, and atrophy in my legs(my legs have rings of indented muscles that look like there forming a circle around my leg right under my knees). I had an ACD & F spinal diskectomy back in Feb.'06 and 2 months after my right arm starting burning(in the muscle where the doc said it was my C5 and guess what...that is the one supposedly had fixed C5-C6.) I got to hurtiing so severly in my right arm and shoulder/neck that I went and had 3 ESI's(Epidural Steroid Injections)...a big mistake because I only got worse after the last one where he(the doc)decided to go through my T's and as the nurse said while I was laying on the table was,"Why is he going through her T's when all her problems are in her C's?" I wondered the same thing, but figured the doc must of known what he was doing until I jumped on the table like a bolt of lightning hit me. I, from then on have been suffering in my whole body. Can you give me some kind of idea on what is going on w/me? I suffer w/burning where ever it wants to burn, stabbing,feeling of an axe stuck in the middle of my back,muscles pulling(but not like RLS...more of just the muscles pulling from the inside),pain all over, aching, soreness, sensitivity to touch.
Have you ever heard of Arachnoiditis or Dystonia. I have done a lot of research myself. I found that Arach. can be caused by having a Spinal trauma and I feel and have been told by a good friend of mine who is a Chiro(Had 800 hrs. of Neuropathy)said that the surgery in my neck(he said that I had a screw that was placed in an opening sitting right on a nerve and had to get it out, but the doc(NS) ignored it and said everything was fine. It is funny..not really, but my chiro friend told me that I would lose the use of my arms and legs...it's happening and it has been 2 or more yrs. since he told me. Now, the ESI's are the thing that can cause the Arach., but I don't know. Could it be...heaven forbid this is it.
Now, Dystonia says that it is all over the body. So, it also says that when you use the muscles it makes the pain worse. Now, that happens to me. I can't do anything bc it causes me to hurt worse. SO, it makes sense that Dystonia would be correct. I am not trying to dx myself, just eliminate the possibilities by eliminating if I don't have the symptom.
Fibro, I know can cause pain, but I truly believe that what I have is something more than that. You know ur body and know if there is something really wrong. I feel that way guys and just know there is something really wrong. I just have to find a good doc...which is hard to do sometimes. Especially if u live in a small town. Roberta, I read all ur post and feel a lot like u do...so it is possible that I have this small fiber neuropathy. IT just sounds like when I was hit by that ESI, it interupted my spinal cord or the fibers.
I just want u to know that what all u said made me feel hope as well. GOD BLESS you and all that ur doing to help us get a grip on life...because sometimes it is hard to get through a day. My hands are burning. I guess I need to stop. I couldn't write this long. I barely can get a small paragraph out before my hand cramps up so bad.
I will stop now and bid u well. I will keep u all in my prayers. God is the only ONE that is keeping me together. He comforts me. I read a lot of His word and that being said. He did state in the Bible "If you suffer...you are mine". I understand that I got closer to Him after I got in this condition. Maybe and I believe this...when we suffer we are His.It is like chastising...what a father does when he loves his children. We are His. That is a true comfort...to all of us.
Take care and I will come back to read what u had to say..sorry I did write a lot...:) Karen
Thanks for your reply. I'm so sorry that you are going through this. It is the MOST difficult thing to go through in life, and it's very difficult for others to understand, especially of all people - doctors. There are great doctors out there, but it is difficult. We are military- and I get referred off base to specialists. I have had the very best luck with doctors at the OU medical Center-( Oklahoma City ) they are a University Hospital. Ask your doc office if you have a University hospital. Also - since you have a lot of serious conditions , with severe pain - your #1 PRIORITY, above all else, is to get to an excellent pain doctor - They have many options/ treatments that WILL HELP you hurt a LOT LESS, AND THEY SEE A LOT of bad cases- and are excellent at knowing what else you may have going on overall. Re- read my posts about why having pain doc is a #1 PRIORITY, and about the qualities of a great dr. vs. a bad dr. Please, get as much advice as you can from my posts. I've been through so much in the last 11 years, and hope what I've learned can help others find the way to a better QUALITY of LIFE. :) It's a real battle - that's why a pain doc is also #1 on the list - HOW can we even get better- if we're hurting too much to get to all our doc appointments??? It would take forever to find the right help/ treatments, meanwhile, the DISEASE of chronic pain gets MUCH worse without proper pain management.
I also think that you should ask your doc about going to see the Mayo clinic - there are TWO - one is in Arizona - (Scottsdale), I think, and the other is in Chicago, Illinois, or in OHIO - I forget. I may go to the one in Scottsdale if my new therapies don't help - but so far I'm still improving.
I'm familiar with the Chari Malformation - it is a very unusual deformity at the base of the skull/ brain stem - you need to see an expert on that - there is a surgery - one MRI I had done said that I have it, yet, a second MRI , the report said nothing. I would do a lot of research on line on it, and your other diagnoses - they always list treatment options, and sometimes WHERE to go to get them.
I definately think you should look up RSD disorder - it is an extremely painful neuropathy - caused by one initial injury - either by an accident, or a surgery. I have a bit of this around my pelvic region. Luckily there are a lot of things that can be done - much of which a pain doc can sometimes do ! RSD - is Reflex Sympathetic Distrophy - it can even cause discoloration, swelling, and weakening of the injured area/ limb. It may even be what the rings are around your calf/ knee area, as well as many other areas of pain you're having. You may even have it in your neck.
Priority #2 - GET a GREAT ORTHOPEDIC SPINE SURGEON - ASAP! Once you have some names, check them out on line for feedback from patients BEFORE you see them., ask about other options for your spine, about removing the screw in your cervical spine/ neck, and ASK if you would be a good cantidate for getting a Trial NEUROSTIMULATOR. Please go look that up on line as well. Just Google/ Yahoo, -Tame the pain.com, or Medtronic , and also St. Judes neurostimulator. I'm not familiar with the other disorders you may have - I would just research as much as you can on line -especially- symptoms, and treatment options. I would be NOWHERE without my online research.
I hope this will help you, you deserve the right care, and to live in a lot less pain. If you keep HOPE, God, are proactive - and have support from family/friends, you will get better -& live in less pain. SOMETIMES, I'm so angry - angry even at God - It's so CRUEL that He allows suffering - If I were Him, I couldn't allow the suffering of the innocent. BUT, we are not God - and don't think the same. I know that He loves us more than we can even comprehend - and I will always Love and follow Him, but I will never understand WHY, and I'll always think that it's cruel to allow suffering. So, I just remember all the GOOD that God gives us, the light, and strength to make life worth living, and I refuse to lose HOPE, or quit fighting. I CAN tell you that it DOES MAKE A DIFFERENCE - you WILL have a better quality / less pain - life - IF, IF, IF you follow the right steps- in the RIGHT order....
AND.....really baby yourself- with soft pillows, long baths, gentle massage, cool packs, heating pads, meditate/ prayer, NATURE, a nice sound machine w/ nature sounds - like a running stream, ocean waves, read great books, super healthy food, natural remedies, soft slippers, good shoes, and always let your family know how much it means for them to be supportive, loving. Be as independant , but ask for help when you need it. If you try to do everything - you can make your pain worse. Sorry this was so long- but it's all important, and so are you. Please keep in touch, :)
All my Love and Prayers,
Hello Roberta, My name is Teresa and I am 43 years old although my chronic pain makes me feel 90. Your posts are very interesting and helpful. I got epstein barr virus (mono) in 2008 and my life has not been the same since. It led to RA, overactive bladder prob IC, I have polycistic kidney disease and deterioating spine. Most of my pain is in my hands knuckle joints, my knees, can barely stand or sit the pain is so bad in my knees I almost cry when trying to stand especially after sleeping. I feel suicidal and depressed alot. The pain in my knees just wont let up even on pain pills. I have a 7 year old daughter, single and alone. No one in my family has RA and noone understands my pain. I think they think Im exagerrating. Im been trying to get on disability for almost 2 years no luck b/c of my age probably. Im next to have a hearing before a judge. I tried to work a couple jobs in the winter and I thought I was going to literallly die in the cold with this RA. Im not sure your that familiar with RA I know you said you have lupus. Maybe 2 diff things but chronic pain with both. I find most Drs here to be very unsympathetic and think your just hooked on pain pills. I dont know that I have a specific question for you, I just needed to talk to someone who can understand what Im going through. I feel so alone in all this. Thanks for taking the time to read. My email address is email@example.com for anyone who just needs a friend or someone to talk to. GOD BLESS...
Hi Roberta, I am doing research for my mom, who is at the end of her rope. She is 54 years old, she had back surgery about a year ago for L5 disc. She had the hardware put in to which we thought that would be the end of her pain. Well, a year later she is in excruciating pain (which is now shifting from her legs, groin, feet to her lower back) that has gotten 10x's worse. She has had numerous tests which come back ok. No one seems to know what her problem is. She now is talking about not living anymore....she has really fought, but with insurance, moron doctors and too many "friends" opinions, she is almost giving up. Please help us if you can. We live in California. Having a hard time finding the right doctor to guide us. She thinks she needs to now remove the hardware?
Thank you Christy
I'm sorry that I'm just now getting in touch with you, AND I'm so sorry that your mom is hurting so much :( My first question is: Does she have a good pain doc ??? In my experience with living in unbearable pain- Having help from an excellent pain doctor is the MOST IMPORTANT AREA of care. Improving her quality of life NOW, so that she doesn't lose hope, and can feel good enough to get to the other doctor appointments, and find the help/ answers she needs.
She's very blessed to have your help, it will make a big difference in her getting the help she needs, to have you in her corner. If possible, try to go to her appointment to ask who is a VERY GOOD pain doctor that she can see. AND ask if she could try LAMECTAL to help with the excruciating nerve pain in her back, legs, feet, etc. Both Neurontin, and Lamectal are anti-seizure medicines that are very safe- and also help take the edge off of nerve pain. I tried neurontin, and several others- with zero results, but the Lamectal definately helps. My pain doctor is amazing, and has literally given me my life back. I'm in 80% less pain, 80% of the time. My nerve pain from SLE Lupus is so severely excruciating- and widespread, that I spent 5+ years of my life bedridden, and curled up in a little ball. The doctors were worthless, and kept saying there was NOTHING they could do.
Then we moved to Oklahoma, and I found my pain doc. He said that he was so sorry that I had to suffer needlessly for so long, and that not many PAIN doctors know how to treat pain properly!!!
He explained that it takes a COMBINATION of medicines to lessen the pain.
He said it's very important to use a slow-release pain med + a muscle relaxant + an anti-seizure OR an anti-depressant. IT IS the THREE together that help.
My combination is the LAMECTAL + ZANAFLEX + OPANA ER ( slow- release narcotic ), And I also take Provigil to keep me awake ( SLE Lupus exhaustion, and chronic fatigue qualifies me to be elligable to use the provigil ). If your mom tolerates medications well- I would ask your regular doc, AND a new pain doctor if she could PLEASE TRY THIS OR something similar. LET them know how severe her pain is, and how it is affecting her quality of life. SHE IS SUFFERING, and deserves to have help.
What does the orthopedic doctor who put toe rods/ pins in her spine say about all this??? Does he have any ideas of why she's worse after the surgery, instead of better ??? I'm no expert, but it sounds like the rods/ pins need to be removed, and that they've possibly made the pain worse. Maybe something shifted, and is now putting pressure on a nerve- SIMILAR to how a herniated disc can cause stricture,and impinge in the nerves of the spinal column, and cause worsening of spine/ disc pain- thus radiating nerve pain, and shooting pains down into the lower back, hip, groin/ buttocks, legs, and even into the feet. Hopefully this can be fixed, possibly by removing the hardware, and replacing the bad discs with the AMAZING BALLOON DISC- replacements! :) I'm not sure of the actual name -I think they are calles Balloon Disc- replacements. I know these discs have been very successful, very effective, and a non-evasive treatment for messed-up discs. The damaged disc is removed, and replaced with a soft- cushion, balloon-like disc replacement. I think this treatment, disc replacement is used to fix herniated, worn, torn, and bulging discs. I've seen the sample balloon discs in my spine doc's office, they are really amazing. Maybe this would be the answer for her ??? Let's PRAY that it is.
If it were me- I would talk to her current spine dr., but would definately see a second ortho/ spine dr. as well - ask BOTH of them about the balloon dics replacements. I would also see about whether spinal nerve blocks could be done to help alleviate her pain. Let them know that you're not happy with the results, that she's worse- NOT better since the pins/rods have been put in. AND NEVER LET them put in any more hardware, AND NEVER, EVER fuse her back. A neurostimulator may help a lot as well. You can research ALL of the above suggestions on line. I'd do as much online research as possible. The neurostimulators are at Tame the Pain.com, Medtronic, and St. Jude Eon Micro neurostimulater. If it were me- I'd do the pain doc, and ask about the balloon discs as soon as you can. I believe that the sooner the chronic pain can be treated- the better the chance of it becoming less severe. STRESS THIS to the dr.'s as well.
Also, I think it's SUPER important that before she has ANY type of surgery- her pain needs to be lessened through a good pain doctor! Getting her pain under control FIRST, could prevent any of the chronic pain from worsening. :)
I'm so sorry for all you and your mother are going through, it is so very hard- I think that severe, constant physical pain is the hardest thing in life to go through. I've been through a living hell, and still have flares, and breakthrough pain- as I have so many things wrong. My nerve pain is so severe and widespread-throughout my hands, feet, arms, legs, colon, spine, and bladder. plus my IC of the bladder, arthritis, etc....... SO..... IF I am A LOT BETTER, I BELIEVE with ALL my heart- that with the RIGHT care, doctors, and meds. YOUR MOM, and many other people can ALSO LIVE IN A LOT LESS PAIN TOO! :)
I'll be praying that the disc replacement I mentioned- WILL BE the solution. PLEASE keep in touch- and let me know what you think, and if I can help find out anything for you.
May GOD bless you both, and work His will in your Mom's healing, and guide you to the right doctors, and the right treatment. With Love,
I read your post and was wondering if you could help. I am one more in pain everyday have been diagnosed fibromyalgia 2 months ago, have gone to so many doctors. I still think there is more to this I can't take the pain. Let me know what you know that may help me...Thanks Ana R.
Roberta, after doing the healthy eating are you better now? How much percent better?
I have the same issue for a long time like yours, I am always in pain. I seen doctors and I went through alot of test and blood work, according to them every thing is normal. I am seeing the nuitrition, I am using alot of vitamin and mineral I was out of pain for a few months but again all got back.
I am not sure lack of energy cause me depresion or depresion cause me pain.
I am tired of my self . I want just go to sleep, I do not want to do any thing.
Any body can help?
PS: Some one told ask my doctor test for LIMO desease.
Sarah, I so understand your pain...I have not told by a doctor that I have anything wrong with me but there are days that I just hurt so bad that I am mean to everyone. I do not mean to be, but sometimes I just can not help it... I believe that best thing that I do to over come my hurting is to just get up and go on with whatever it is that I have to do, whether I hurt or not. I do not always like to and most of the time I wish that I was in the bed, but that hurts to after awhile. So really I can not win for losing. I believe that it is my children that keep me going.. I have to say that if I did not have them I would never get out of bed. Then I think that there are so many others that hurt and do thing anyway so I tell myself to get up and move.
IDK how to answer your (???), sorry>beacause i'm 14 and i'm having the same problems x-cept w/ the amount of test i've had the doc's still haven't found anything,yet.
I too also suffered from chronic debilitating fatigue and depression for over 15 years. Recently I've eliminatied sugar and white flour from my diet. I now eat only whole grains |(yes, bread) beans, veggies, fruit, leans meats. I also got a dog and he forces me to walk him at least an hour each day. While the depression and fatigue has not completely gone away, I am much, much better. In my experience, the right food can be the best medicine, and with exercise, even just walking, the transformation is remarkable. ( I also lost 30 pounds without any hunger or using much willpower.) Please, if you haven't tried changing your diet, I strongly urge you to do so, you have nothing to lose. Best wishes.
I too suffer from what everyone else has. I was told I have degenerative arthritis, ok, but should I hurt every hour of everyday? I get depressed, I'm on Zoloft, Tramadol and Meloxican for pain but nothing really helps. My only thing I know does not help is I am more than 100 pounds overweight and only 4'11" tall, so that is a major problem. The problem with that is insurance will not pay to have bypass surgery(Medicare) so I can't do it on my own, I've lost thousands of pounds over the years only to put it back on, so that also adds to my depression. Getting up everyday and putting on a smile is very difficult, thank the Lord I have an understanding husband and family. Beverly
Hello, My Name is Amanda, I'm 21 and a couple years ago started hurting... It started in my legs... moved to my hips then my ankles then my arms, then my back... then well... EVERYWHERE...
It feels like my bones are breaking... they are grinding together in places where it impossible to grind... It feels like my bones are all broken and poking out at me in places that I didn't know I had bones. This usually starts horrible 10-20 second charley horses where-ever I am experienceing the "poking" feeling at at the moment, which is everywhere but scattered through-out my body... I feel it in my legs, my hips, my arms, my chest, my back, my feets, my hands, my head. It feels like I'm broken, and somebody took away the cast too soon. After the spasms are over I'm stiff and soar from the whole ordeal; and well it starts over... I am occasionally comfortted by the releif of my WHOLE BODY FALLING ASLEEP. From my head down will go to sleep; the tingly kind like if you sit on your leg too long, if I lay still enough, or sometimes, if I"m just standing pretty, I can actually fall off my feet, because my body hates me... and will fall asleep...
My doctors are dumbfounded because other than me having no immune system (no leukocytes, no neutrophils), which is causing reoccuring infections; there seems to be "nothing" wrong with me... Lupus came back positive for a minute, but then went negative, RA came back positive for a minute also, now it is negative; Same with the Thyroid, though they have chosen to treat me for that. It seems my body truly does hate me... I wonder if the doctors do too
I found this website today; well because I'm trying to figure out what is wrong with me; I'm doing research on Fibro; and other things that I think it may be. Fibro and hypothyroidism is the only things that I've been officially diagnosed with; almost 2 years now. Everyday it seems to get worse. I feel as if I should be in a full body cast, no aloud to move, because it honestly feels as though I'm breaking my bones. My DR has told me "bones do not feel pain" so it HAS to be FM, because it is really JUST my muscles hurting, and I just do not know what i'm talking about. I take robaxin and loratabs for the pain... EVERYDAY... i'm starting the epidural shots soon... then i will just be numb... paralyzed from the neck down... I'm just wondering if anybody else has any of THESE problems. Others have reported FM symptoms; excrutiating pain and fatigue; but I have never heard of a BROKEN BONE SYNDROME... so have i discovered something new, or am i going crazy...
OK, I do not know what you all are going through. But in my search for a cure to health, nerve and pain issues. I have found a cure for me. I am now 12 months from any pain, illnesses, or nerve issues. It is NUCCA. Yes that is correct, NUCCA. If you think that I am on crack, then continue to have pain and constantly be on medication. Me, I was tired of the pain I was having.
What runs our bodies? What tells our organs to function? Our BRAIN. And what sends the signals to our body? NERVES? At the top of our spine is a bone called the ATLAS. I have learned that if this bone is out of wack, the rest of our spine will follow. Coming out of the base of our brain is all of our nerves and spinal cord. If the first bone in our back is not giving a clear pathway for your nerves, then you WILL have issues. I am not a NUCCA doctor, I am just a person that feels the word needs to get out about it. If anything, find a NUCCA doctor and at least hear what they have to say and at least, get a check up.
Well Thank you for you kind advice... I am seeing a neurologist on the 25th of this month... I already planned on talking with him of possible misalignment of the spine/neck area and seeing a chiropractor or something/physical therapy (myosomething release something, lol)... I am desperate for something that doesn't contain this regular schedule of 10 pills a day, and with the last doctor's appt only offering the advice of b12 and d3 adding to it... and shots starting next month... I just don't know...
Anyway, thanks again, and I will be looking into chiropractic therapy/NUCCA if possible.
My name is Theresa,
I can remember the strangeness of that very first day that I notices something was different. My daughter had died that spring in an accident, and I suffering from major depression hid away from everyone for months. When I started to rejoin my old life, I noticed that my arms just above my wrists were painfull. I took it as though I had bumped them or hit them and just didn't notice. After about 4 weeks I went to my doctor, who xrayed them, and came back with, nothing is wrong. The wierd pain continued and then came my feet. I would take a step out of bed in the morning and it literally felt as though my feet (both) were broken. I would shuffle along until they loosened up a bit. I went back to the doctor, more xrays, and this time a blood test.
No broken feet, however, my vitamin D level was non-extistant, I was anemic, and I didn't show much in the way of "inflamation" so she did not think it would be arthritis. I tried to use bengay, anything topical as well as the vicodin that she gave me. I could not sleep, but felt like I was exhausted, I couldn't remember names specifically, could not remember words to my favorite songs, and the pain continued to get worse. She sent me to a Arthritis Dr. and although I did test positive for one of the blood tests that can lead to a diagnosis of Lupus, the rest ofthe tests came back showing it was not lupus, or RA or anything else. I went back to my regular doctor for answers and she had nothing to offer. She then sent me to Mayo Clinic in Minneapolis. They found severe vitamin D, Iron and magnesium deficiecies, but nothing else and after 4 days of testing I went home with no answers and a bottle of Vitamin D 50,000 units, to be taken 1 per week along with 2000 units per day. I was told to get iron tablets and magnesium in over the counter pills. Again I tried to resume my life, and found that the pain was pretty much body wide now. I went back to my doctor and she told me about her concern that I was going to become addicted to vicodin, and was talking in a tone that I found to be rather upsetting. It was as though she thought I was trying to "score" pain meds. I was in pain, embarressed and wondering what to do then. My husband went with me to another visit. He told the dr. just exactly what my pain is doing to me, and to our family. I am raising my grandson, and I will not just go gently in to that great wheelchair. By this time it had been 7 years of this and it was only going to get worse. She prescribed 2 doses a day of Oxycontin as well as up to 4 pills per day of Vicodin. I was then also 300 pounds and 5'10''. She said that if I got some of the weight off, I may not even be in pain at all. I thought that was great advice to give after 7 years of agony, 129 pound of weight gain. Its now been 2 more years and the pain continues to progress, though my weight has not been rising, it's no lower either. I have my mother, who is comes over everday in the morning, has a huge massage machine that she puts on my hips and back and hands. My 74 year old mother helps me, her 45 year old daughter get moving so that I can getto my b
Doctors have to watch and make sure people don't get addictive to pain meds. I was on Vicodin for 10 years. Then was on morphine tabs and I had a reaction with some difficult to breathe shortly after taking them. I have been on 59 mg. Fentyl patches and 2-3 percocet a day for a few years.Was told in time I would be on a morphine pump.If I am feeling pain to take a percocet I ask myself if I could wait a lil and if I wait and not dealing I tske s percocet. I have no drug problem after this lengh of time. of course anyone that has been on narcotics for a length of time would have to be weaned off. I told my doc if I felt like I was taking more or felt like I could abusing them he would be the first one I would be running to. I got enough going on with out having that problem too. Geesh!
I had the same pain and finally got a diagnoses of mercury toxicity after a Urinary porphyrin profil was done. The mercury came from flu vaccines, 5 RhoGAM shots and 3 amalgam mercury filling in my teeth.
I have the same problem. My pain is so bad that i am at the point of just ending it. I see a shrink because of the pain. It is all day every day and just seems to get worse everyday. I don't think it is Fiber no one hurts like this all day everyday ..Well I go to find out he has Fiber and I am like how are you going to help me if you can't help yourself. The pain is from my neck all the way down to my feet. All I think about all day everyday is PAIN PAIN PAIN It never goes away I am only 52 years old I am not going to live like this until I die. No one needs to suffer like this...They have pain pumps If I can't be helped then that is my next thing I will be looking into.
It just cost money for doctors to say FIBER thats what it is. NO WAY No one hurts like this unless you have a serious problem...I believe I have a serious problem..Doctors need to quit taking our money and start helping us...I don't want to deal with the pain I want it to go away I want my normal life back.
I have the same pain all over. I have had it for a couple of years now. I can't figure it out. I have done all of the blood work and all they come back is abnormal inflammation and everything else looks good. I am taking Tremdol and Vicodine for the pain. I am afraid of dying from Liver cancer or liver failure from taking meds every day. Please, let me know if anyone has any answers. I have neurologist appointments lined up and I have seen a few doctors. I am only 32 and in a lot of pain daily.
Have you ever been tested for heavy metals? That is a possiblity!! They usaully do a hair, or fingernail test to find out your bodies metal content. Good luck!!
dont worry abour cancer from pain meds, i take them everyday, if you need to you need to, alcohol would be worse for your liver than pain meds. Did you ever figure out what your pain is?
Im only 33 and I have the same thing. Its so bad I cringe when my children want to hug me because it hurts so much. everytime I go to the doctor I get no where I don't even think they listen. Im miserable all the time and don't know what to do.
I was watching on T.V the other day that there was this guy that thought that he was dying and the doctors had no idea why. Come to find out he had been bitten by a dear tick that had lime disease. I would not thought that something so small could bring someone down so fast.. Not saying this is what you have but it would not hurt to check it out. GOOD LUCK
hi ive been suffering from the same problem for four years and was only told in november 2009 i had fibromyalgia. im now seeing a rheumatologist having loads of blood test for weight loss. im so tired i dont go out during the week. i am also suffering with a frozen shoulde wich is quite painfull so im strugglin with teo loys of pain. i find every day life one big sruggle. lack of sleep does not help. im on tramadol and amitriptyline at night but only sleep for an hour. ive forgotton what normal life is like. i try not to let this get me down but it is hard not to. im so frustrated at times because i cannot do much for myself. thank you jan
I have had trigger point injections, epidular injections, pills pills pills. I have a blugging disc and doing surgery would take care of it but instead they want to fill you with pills and needles...now from the steroid injections I have candida (Yeast infection) in my throat that I can not get rid of and it is very pain full. So now I am going to a gastroenterology Dr. Because me Family Doctor can't seem to fix it... It has been a year for the candida. I have been treated for it but it does not go away. So I am going to schedule a endoscopy to go down in my throat and try and find the problem.
Any how the injections do help then they lead to other problems...The doctors just don't want to take the time to really help you it is all about money... I have great insurance I only pay 10.00 co-pay and nothing a month. My company I work for pays. And I still can not get the help I need..
Hi. My name is Heather and I was diagnosed with fibromyalgia when I was 22 years old. I am 24 now. I feel exactly the way that you do. I feel like there is something horribly wrong with me and that any moment of any day I'm going to die. I have no insurance so I am unable to go to the doctor. My pain, I'm sure, is not as bad as yours but I'm on this website tonight because it is getting worse, and unlike many people with this condition, I do not want to rely on a pain pill to get me through this. I am to young. Plus, I have to small children and I don't want to not be able to live a normal life for them. I am in so much pain right now and my right arm keeps going numb because of the pain so I must get off here. If you have any advice for me please email me at firstname.lastname@example.org. Thank you so much. Anybody else who wants to leave feedback for me please do. It will be greatly appreciated.
I am also in chronic pain all the time.I am 35 and married to a great guy.I am a mom of 7 kids.I get plenty of sleep and have a fairly healthy diet.Every morning I get up I feel like I have been hit by a mack truck.My doctor has no idea what is wrong with me.Just gives me perocet,addrell,paxil,and a vita D supp.This is stupid I know. I only take the pain pills.To many side effects with the others.But now I think I am relying on the pain pills to much.I have so much to do day after day that I can do it.I have no energy at all.My legs hurt,my sight is funny,my memory is getting worse,hot flashes,insomina,and aches all over.I am sick of being sick.My family doctor said I had abnormal cells in my uterus.Have it taken out.My OBGYN says I am healthy and not to take it out.Since Jan.I have been getting my periods 2-3 times ob says I am overwhelmed.No kidding! I just cant stand this.My husband is busy farming and taking care of the kids I should be able to do this I feel so guilty.I am there mom I want for nothing more then to have the energy to cook and clean.thanks to all that read email@example.com Dawn Abrams
I take ambien cr every night or I would not get any relief from the pain that I suffer all day long. It's my only way to get some relief. I get a good 5 hrs. of rest and then the hell starts all over. Try a sleep medication - at least you get some sleep at night.
Know, I have never been tested for heavy metals. Never thought of that. I've just been tested and tested and tested. I was diagnoses in 2003 with Fibromyalgia, pinched nerve,herniated disc, and more recent,chronic migraines. I recently had an EEG done by a neurologist. All I got back from him was a bill. No diagnosis, no nothing, just a bill. I have taken every medication under the sun. Some having an allergic reaction to, others would just make me feel very sick, nausea, dizzy, etc. Recently, I was told by my MD that my liver showed abnormalities. I had an ultrasound done on March 5, 2010 and again to date no results. I am currently experiencing chronic and throbbing pain in my left arm. It started with the front of my elbow and my elbow. Now it radiates up and down my entire arm. I also get a not so frequent slight buzzing in my left ear. On top of all the other pain, I just don't know what to do next. I don't know what type of doctor to go to. I thought about an endocrinologist. What do you think? I will be 57 next month. I work everyday, although very hard to do. I can't afford not to work. I work everyday with so much pain, I cry in intervals during the day. I am married but I don't think my husband understands my pain. I love for my house to be clean. I struggle to do that but my bedroom is a disaster area. I just don't have enough get up and go to do it. The pain is too much. I have 2 grown children, who I don't think quite understand. Two of my grandchildren live with me. Well, I am pretty much at wits end. I apologize if I got off of the subject a minute but just needed to vent. Thanks for listening.
Miserable in NJ
Hi Heather. I do not have Health Insurance either. I am 34 and a mom also. My husband tries to understand. Keyword "tries." I hurt all over. Pain comes and goes. I have shooting pains, aching pains, just pain pain and pain. I am exhausted. I have been diagnosed w/ condromalasia<spelling?. It is the wearing of joints in the knees and have cortizone shots but the pain I have is HELL. I am exhauseted and frustrated. I was wondering what can someone w/ no health insurance do other than pray. I have migraines too so I take 10 mg loratab a day and now I am immune to it so???? My prayers are with everyone who suffers from chronic pain!!!
I was bitten by a deer tick last September and never thought to get checked until I developed chronic fatigue and horrible body pain in mid October. I was diagnosed with Mono, and two weeks later the doctor called me and told me that I had also tested postive for rocky mountain spotted fever, but it seemed to be in remission, so there was no need to treat it at that time. She then went on to tell me that, since we didn't catch it and treat it, it could come back at any time, as well as trigger my mono again. It also leaves me at a greater risk for developing fibromyalgia. Since I got sick, I've experienced chronic widespread body pains, fatigue, depression, memory problems, and a few personality changes. With all of this, there are no doctors out here who will even consider a fibromyalgia diagnosis. I have no health insurance. What is a person to do in this situation? Sometimes I feel like crawling into a hole and dying, but mostly I just feel anger at the non-chalance with which the doctor gave me the news in the first place. It wasn't her life being affected; why should she care?
Now I'm paranoid about the RMSF coming back; I constantly check my temperature (I didn't have typical fevers the first time; I spiked from 99 to 101 for an hour once, but only that one time) and I get worried when I get overwhelmingly tired. This is no way to live! I'm only 35 years old, and I need to be able to work to support my family, but between the depression and the fatigue and the aches, I am struggling just to hold a part time job. How do you get a doctor to take you seriously when a) you have no health insurance, and b) they think fibromyalgia is something old people get? I hate living in such a rural, backwards place (southern Missouri).
I completely understand where you are coming from!!!! I have had pain all over my body for a little over 4 years and I am only 46 years-old. This is rediculous!!! I agree completely!!! Nobody should have to live like this for the rest of their lives!!! The doctors don't know what is wrong with me except for a Rheumatologist who says he believes it is Type IV Central Mediated Pain Syndrome...what the heck is that??? I have been tested for everything from Lyme's disease to neuropathy, arthritis, hepatitis, auto-immune disease, etc...and nothing...I would sure like to know where this pain is coming from. I am taking Neurontin, Ultram and Cyclobenzaprine and I am afraid that my kidneys are going to give out from all the stupid medicine I have to take. I don't know anymore if the medicine is helping me or hurting me worse. I want my normal life back too! It hurts my heart to watch others run, play in the snow with the little ones etc...even in the grocery store it brings me to tears just to lift a stupid bag of groceries. By the time I get in the car from loading them in it I am exhausted, then I have to unload them when I get home....I don't even do it anymore unless I absolutely have to. It hurts to walk on concrete floors...going to Wal mart is like taking a trip through the house of pain. I'm sick of this pain, absolutely sick of it. The only thing keeping me around is the thought that if I do something stupid to myself I will cause many years of pain for my children, husband, family and friends. I just can't do that to them. I don't want anyone to hurt the way I do, not even emotionally. We have to stick together and keep pushing forward because their WILL come a day when someone brilliant discovers what it is that we all have....I want to be around to look in the faces of my doctors and say..."Now do you believe me??? I told you it was not in my head!!!!"
Back in 06' I was hit by a pickup truck doing 45 mph and was tossed 30 ft landing on concreat in the sitting position. My whole life before that was a search for the next thrill, mt. climbing, sky diving. # months after that happened the PAIN started and i lived with it till it got so bad i had to see a pain mngt Dr. Long story short I found a drug combanation that works. I would not take pills esp narcotics.
I will say that the pain is real and effects my everyday life to the point that I want to lay in the corner and die. nothing helped. Till i found TRAMAHDAHL HC 50 mg The first day i tried it 20 min later i walked my dog 3 miles and picked up my son for the first time. If that wont work for you. Try orphenadrine(muscle relaxer) 100mg along with Percocet 500/325 mg The diffrence is like nite and day. and i have my life back. without these i would have givven up a ling time ago. Dont let anyone tell u the pain is not real.
I am so so sorry dear lady! I understand how you hurt! It is undescribable and only those suffering truly can have an inkling of what it is like to live with Fibromyalgia pain and fatigue. When one part of the body quits burning and hurting, something else flares up.
I have had to quit work, suffer from the lowest form of self esteem, and am suicidal on a weekly basis! No one will ever understand what I feel. Nor what you feel because it is slightly different from person to person. I am with a Fibro Support Group but it doesn't help much because we are all in pain and it is very depressing to be in the compnay of sick people. My husband is verbally abusive, tells me to get a job, to leave him alone and for me to stay out of his business. Our marriage is non-existent but I have no where else to go. I am very, very, depressed.
My daughter went to Russia to work and I sometimes wonder if that is her way of dealing with my illness and deteriorating relationships with husband, family, and friends because I can't manage my illness and unstable emotions, activity schedule and inability to help my children in life. The other daughter is extremely overweight. I feel very isolated, alone and unloved. I imagine every other Fibro person feels the same and is going through much the same life progressions because of the disabilities caused by the disease. It doesn't help that we are aging and live in a very high energy, high skill level, high career oriented society.
I give you my deepest regrets and condolences in regards to your poor health, pain, unlove, being misunderstood,not listened to and lack of healing. It seems there is so little hope but I am thankful for each other. Thank you for sharing your distress as it gave me a chance to hear you and be heard. Thank you.
have you started a "coated" asprin regiment? Add Fish Oil and glusommamine (sp). I also use good vitamens, D, C and B's. I'm not sure where you're located, I'm sorry you don't have a "free" (reduced) clinic. All the above should help. typical 3 asprin every 4-6 hours when needed, but can go up to 4. Just don't make a habit of it. Try to use "coated" asprins, real asprin, if you do not, your stomach will begin to get sick. Let me know, ok?
Hey, I'm sorry, all my response was deleted. bummer
coated asprin, 3 or 4 - 4 or 6 hours apart. Coated so it doesn't hurt your stomach. Stay with asprin. Vitamens - D, C, B's Fish oil and Glusomomine (sp) and move free.
You can take the edge off alot with this.
Stretch everyday. Janna
I have read several of the posts over and over, as it seems just most likely everyone here feels about the same way that I do. I used to be in the miltary, and had damaged my back (bulging/herniated discs) early on in my life but was able to go to a chiroprator to feel better. When I was 30, I wound up having a heart attack, and then a second two years later with a blood clot that has since ended my career. Not shortly after, I started having more and more pain, that has now consumed me and runs my life, no matter how hard I try. My treatments started with:
Initially just some meds, and when that didn't work, I had some cortisone injections in my back.
The pain got worse so I was prescribed perc, with opana ER which worked for a bit, then things got worse again, and several forms of the morphine were tried, and I was moved to roxicodone. ...at the same time I had RF treatments done and several surgical consults which resulted in surgeons saying that it probably wouldn't help due to how fast my back has deggenerated. Now, My pain doc is looking to take pressure off the nerves by scraping the tendons by them and the spinal canal in hopes that it will help(Has anyone had this done ?)
I have been tested for Crohn's, lupus, FM, and another I can't think of to now avail...all of which I was told I don't have. Is there any other options ? The pain is manageable with taking the meds but requires me to take more than prescribed to do any chores, go anywhere, stand...etc. Nights are the worse with the pain in my neck, I have loss of feeling and tigling in my hands/arms and legs...I wake up with everything hurting then on top of it, feeling like every position I fall asleep on, goes to sleep and does the pins and needles, and next day is sore ? I have gone through 5 beds and have a sleep number with moemory foam (which was the best so far).
Does anyone have any other options ? Don't think it's lime's - I have heard that there is a possible link to injections I may have gotten in the military...but can't confirm that.
Hello, I might have an answer to ur question @ the injections. I feel the same way. I had a series of 3 Epidural Steroid Injections that I believe done me in. I was just hurting in my arm and neck/shoulder, but after the injections...well, the first two did help my pain, but the third one the doc went from my C's into my T's and that is when he hit something that caused me to jump on the table. He called it "Friction"...yeah,I think he knew he messed up. I was made numb in my hands/feet immediately and he didn't do anything but send me home like that. I am still numb in my hands/feet and it has been almost 5 yrs. There is definately something to it. I know of one thing that arises from being hit and that is Arachnoiditis and that is not good for it is uncurable and feels like terminal cancer without the dying. Not to say that if that is what I have It hurts to think of it. I pray that it is not, but I sure have all the symptoms of it. Hopefully this is not what u have. I pray we all don't have it. I know I go through H***L with the pain I endure and seem to be getting nowhere. Pray...that is all we can do and have faith. There is a reason and we have to keep looking for it. Stay strong and don't give up...there is an answer and we'll find it...GOD BLESS...always..Karen
i have samething like what ur r having but mine dont move around much mine its in my neck/between my shoulder blades. pain stiffness is always there and sometimes pinching/burning comes along with all that too.causes me too have alot of headaches all the time. i cant keep a job cause i cant go too work most time. cause of this problem.
my neck/shoulder muscles feel like rock hard all the time went too doctor had xray/MRI scan/blood work done everything was normal.
my doctor told me i need to go see fibromyalgia doctor.
tried muscle relaxers 5 r 6 types none help at all. doctor gave me lyrica meds. didnt even touch the headaches r pain.
im so sick of this muscle pain/headaches and feeling tired cause i wake up all hrs of the night.
this been going on like for a long time now i thought it was just muscle stiffness. past too yrs it has got alot worse. i try stetching my neck muscles it helps very little. even if it does help stiffness is back with in hrs.
im now waiting to find out when i can go see a fibromyalgia doctor..
i hope he can figure out my problem.
ive been hurting for 2 years had every test done stated in my neck ,now my back shoulders and the back of my legs and top of my feet ,feels like tendonitis threw my whole body,i dont know what kind of doctor to see anymore been diagnosed with graves disease take synthroid 300 mcg and cytomel for that also my blood work should me positive for ebstein barr virus tired of living this way tried cymbalta lyrica pain meds the only thin that helped a little was a steroid called medrol but dont want to get huge eighter any help would be appreciated
I'm sorry you're having such a hard time. I didn't get significant relief until I started trazodone at night about 20 minutes before I go to bed. Doctors want to start you out at a higher dose, but all that does is make you feel drugged and maybe give you some other side effects. I now am not in agony anymore. I still have to take my magnesium and malic acid, but with the trazodone I'm not being overrun with the pain. For those willing to try it, I would recommend breaking 25 milligrams in half the first night then go from there. This drug has made such a difference in my life. It is an old antidepressant. THey found that it's not the best antidepressant, but that patients slept better and reported less pain. I hope you find the relief you're looking for.
i just started taking magnesium..how many milagrams should i take...i've been taking 2pills at 250 mg once aday....i just started taking Savello for fibromyalgia. it's only been 6 days...i don't feel any different..
I think you need to change your diet have you heard about the alkaline diet or the raw food diet, I think that might help you as I also had the same problem and feel a bit better now also I know of a good natural Dr call Dr Sebi his web site is www.drsebiproducts.com, www.drsebi.com . Also you might want to get a live blood analysis done I did one and was shock when he DR told be where my problems where and where I get pain without me telling him. That was much better than my GP who told me nothing looked wrong with me The guy that I went to is called Errol Denton he is certified nutritional microscopist , he is in London am not sure where you're from but I am sure you can find one in your area . The cure is in nature . Please leave a message if you wish to contact me. Also a useful web site is the earthclinic i have found many useful remedies for my alienments
I think you need to change your diet have you heard about the alkaline diet or the raw food diet, I think that might help you as I also had the same problem and feel a bit better now also I know of a good natural Dr call Dr Sebi his web site is www.drsebiproducts.com, www.drsebi.com . Also you might want to get a live blood analysis done I did one and was shock when he DR told be where my problems where and where I get pain without me telling him. That was much better than my GP who told me nothing looked wrong with me The guy that I went to is called Errol Denton he is certified nutritional microscopist , he is in London am not sure where you're from but I am sure you can find one in your area . The cure is in nature . Please leave a message if you wish to contact me. Also a useful web site is the earthclinic i have found many useful remedies for my alienments
Thanks for everyone's posts. I just wanted to say that I've experienced similar levels of pain over the past three years and sometimes feel like I'm dying. Due to my history with alcohol (been sober for 11 years), I refuse to take pain meds. Every so often I have a good day, without the pain, without fatigue. I'm still looking for answers though...that's how I found this post. In short, clinically I'm a healthy male, 47 years old and Dr's have been unsuccessful at diagnosing anything from blood tests, xrays yada yada. I do see a chiropractor when things get really bad and have even had accupunture.
I can share with you two things that have helped me.
1. Stay physically active no matter how much it sucks. Your spine needs it.
2. Check out Tai Chi and Qigong. ( Flying Phoenix Heavenly Healing Chi Meditations)
Brent in New Mexico
sounds like you may have fibromyalgia or lupus. my mother has this and for the longest time it was hard for her to wake up or even go to work . everyone thought she was just lazy and winey. now we know. here lately ive been experiencing the same thing. blood work will tell you if you have lupus. if not then its fibromyalgia. i recently this semester withdrew four classes one at a time and withdrew the fourth one one week from the last day of school. becuase i just couldnt get up and get there. a very lazy fatigue and body aches worse in morning or whenever you decide to get up than throught out the day.
There are some very good doctors out there who actually recognize Fibromyalgia and Chronic Fatigue syndrom which sounds like your problems. I have suffered many years also. I research constantly on the internet and books that are available through amazon. Every one is different and what works for one may be different for another. The key is to keep researching and keep trying. Finding a doctor who specializes in this is also critical. It took me a while but I finally found a doctor who understands and tries different treatments. There is also a good book by Dr. Tatlebaum called from fatigue to fantastic. A good website is www.vitality101 with many options and links for further help. I have a long way to go to feeling better and some weeks I can't get out of bed, but I am improving. God bless you all.
Sarah im 47 and i have ra and fiber and poss lupus. i feel all alone no one knows how it feels to deal with this hell i cant even use the restroom without meds
my husband acts like im ruining his life which i understand he used to be married to a attractive full of life and energy and very sussful. sorry about the typing its difficult. iv done something latly that im very sared about. its like im waiting to die instead of enjoying living. do you have support? do you have someone that understands? i hope so because i know the pain of not if its any consulation i know how hard this is ... my thoughts and prayers are with you Renee
Hello all! Most of you sound like me. This is going to be long but I thin what I'm about to say will be worth your time. My journey through this sickness started about 5 years ago. I'm now 36 and I finally feel better than I have in those five years. Am I cured? I don't know but I do now one thing I don't have any symtoms of have what they diagnosed me with. At first it started with muscle pain in various places, everyday it was somewhere else; my hips, hands, feet,, shoulders knees, chest pain and my hair falling out. I got to where I could barely walk not to mention the fatigue. I honestly thought I was dying because at first the doctor's (and yes I mean doctor's) could not tell me specifally if it was Fibro, Lupus, RA or some other autoimmune disease. I have seen so many of them to try to diagnose me. Finally a 1 1/2 years ago I finally found a doctor who referred me to a Rheumy Dr. (Insurance companies are a trip) She did some testing and came back and said it was Lupus, RA & possibly Fibro too. I was devistated to say the least. I start on a high does of prednisone and methotrexate. With the steroid of course all symtoms went a way I felt like Superwoman then I read up on Prednisone an MTX and found out all of the horrible side effects. I immediately asked her to wean me off of the Prednisone because all it does is mask the pain and at away at your bones. All HELL... yes HELL broke loose I felt like crap again. She keeped increasing the dosage on the MTX. I was up to 8 pills a week still feeling pain, swollen joints & fatigued. I have been married since I was 20, I have two kids and basically I was good for nothing and contemplating filling out for SSI so I could come off the job. I started to do my own reseach on the internet last December and decided to wean myself off of every medicine I was on becuse it they weren't working. I decided I would gradually decrease everything and be off by Feb 2010. I also had a co-worker who has MS and her medicines were giving her horrible side effects. She is very fit, Vegan and and has Guten intolerance. One day we were talking and she said I've been researching Vitamin D defiency and it's relation to Automimmune diseases. She had he levels checked and she was near depleated. She weaned herself off of all her medicine too and started taking high doses of D3. She went to have her annual MRI and to her & her doctors amazement she had no new leasions on her brain. Now back to me...I had my levels checked in Jan 2010 and it was at an 8. The normal level for vitamin d is 25-45 so says the FDA. The doctor told me to take 2000 IU's daily but by Feb (mind you I did not share the fact that I was weaning off the drugs she had me on) It has only increased to a level 12. I then decided after seeing an article on a website called The Huffington Post to increase my levels to 10,000 IU's a day. I now feel great!!! I'm excersicing again, I have no joint pain or swelling anywhere. I am no longer fatigued!!! The other thing is it only took a few days and I immediately saw the improvement in my quality of life. Now I am not a doctor nor do I play one on TV but let me tell you after my reserching I found out nearly 80% if Americans are defficient in D3. We have all been bambozled by the FDA, Doctors and drug companies!!! Most diseases come form being vitamin D defficient (the Flu too). They want to keep us hooked on thier man made drugs that cause horrible side effects becuase they cannot profit from the nutrient called D. Please google The Huffingtom Post Dr Mark Hyman. The article is called Vitimin D: Why you are not probably getting enough and how that makes you sick. Read it, digest it and I suggest getting your levels checked and getting on a regimine ASAP. Also just and F