Thursday, September 18, 2014
Saturday, September 20, 2008 melissa, Community Member, asks

Q: i have severe muscle pain, stiffness, fatigue, joints popping constantly, im 28 whats wrong?

I am 28 years old and suffer from what i dont know. Do you? doctors say i have fibromyalgia, i say they are full of it. its like something is eating me alive. last year i was walking 2 miles up hills while pulling my son in a wagon, gardening, running, jumping. now i can barly get out of bed and when i do i am in pain all day. symptoms: joint popping, fatigue, stiffness, muscle aches, lost all flexabiliy. I cant do anthing anymore and no one knows whats wrong. i have had a lot of blood tests but nothing else.(all normal) desperatly seeking help and a doctor that know what the hell could be wrong. I want to feel 28 not 128.

 

melissa

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Answers (107)
JB, Editor
9/30/08 1:53pm

Melissa, I am so sorry that you are in such pain and, seemingly, for no reason.

 

You've got to go back to your doctor (or to another one) and demand that they help you figure out what's going on.

 

Your symptoms could be attributed to several conditions.

Ask your doctor about rheumatoid arthritis. Symptoms include morning stiffness, joint pain (on both sides of the body), flu-like symptoms and fatigue. Though it typically strikes women older than you, it can affect people in their teens and twenties -- it can even affect small children. You could see a rheumatologist for help diagnosing this (or ruling it out). Visit our Rheumatoid Arthritis site for more information and ask questions of the community there. They can help get you started.

 

Also, ask your doctor about Lyme Disease. Though it affects a lot of body systems, some symptoms do inclue muscle pain or weakness and extreme fatigue.

 

You may also want to check out this page on Guides to Chronic Pain conditions. It lists several things that can cause all sorts of pain.

 

I hope you get the help that you need. Visit again if you have any more questions!

 

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dazel60, Community Member
9/24/11 8:32am

Hey everyone,

Well I am 51 yrs young-ha ha  and am going thru the same thing.  I am so fustrated.  I have had arthritis in my lower spine for 4yrs and now its in my neck.  However, I awoke one day 9wks ago with sneezing,runny nose..two days later I came down with swelling,pain severe in my knees. Said allergy arthritis..ok then within two more days my arms began turning red I started burning and little dots popped up..My doctor took One test said no RA come take cortisone shot?  I didn't go.  It then went in my eyes and they burned severly for 3days and then my hands. Joint pain,burning,peeling,swelling.I cried and cried..then the muscle pain started.  I went back sed rate ok.. My wbc is high and monocytes high along with platelets but he looked at me and said arthiritis.  I told him I just didnt believe it.  That this is something that is taking a course.  Now I am waiting on adrenal gland test.  Personal I don't think it will be abnormal.  I truly think I either inhaled an allergen or a fungus or it is my immune system.  This has been the worst 9wks of my life! I am 51 and have been thru alot and these doctors just think they know all.  I am on a downward slide of this but when I get up I cant even bend my knees and my arms. Its horrible' Hope to talk to you guys soon.  I have decided if these gland testing comes back normal I am going to an allergist/immunologist and see if he will take me seriously..Ive been in this body too long not to know something is wrong...Love to you all and hope everyone finds relief and a good Doctor.  D

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skeetelmore65, Community Member
11/19/11 9:41am

Dear Dazzel60,

     I know exactly what u r feeling. I am there and it is utter "H" on Earth. Cry Why can't the doctors just listen to us. They think they know it all and don't give us the respect we need and deserve. THIS PAIN isn't anything to sneeze at! This is hard and the pain is 24/7.

     This all started with me after a neck surgery on my C5-C6(ACD & F spinal diskectomy). My right arm bi-cep muscle started to burn and I went back to see the Neurosurgen that did my surgery. He ask me where the brunt of my pain was and I told him that my arm burned. He said that it was my C5..how? He put me on Lyrica, in which I didn't take for a yr. bc I didn't want to have to add anything to the pain medicine he had already prescribing, as well. I can say that I was always the kind that didn't like to even take a motrin for a headache, but after that pain kicks ur butt real good and it takes over, then yes, u will take the medicine prescribed.

     I do have to advise others of this important fact of something I wouldn't do ever again that could have added to what I am dealing with now. I must advise everyone out there to NOT have the nerve blocks, no matter what kind of pain u r dealing with. I was hit by one, I think in my nerve fibers surrounding my spinal cord and I wonder, if it isn't the cause of most of it, but with the pain ALL over, l donno what is going on exactly, but do know that the pain can be absolutely unbearable.:(

     I started having places come up on me like little tiny pimples with redness, swelling and burning pain come up on me to and other places that like someone took a knife and slashed me really good. After, I started taking the Lyrica all sorts of things started happening to me(this is a BAD medicine to have to take). I started swelling and my sed rate did get up to 55 and was seen by many Neurologists, bc I was balling up in a fetal position and wreathing around in bed like someone was torturing me. I literally felt like I was dying and it wouldn't end.

    Now, I am in bed, most of my day. At the least, I spend 80-90% of my time having to stay there bc, I can't use my muscles at all, to do anything hardly, but lay here and try to research my symptoms bc it sure doesn't look like the Doctors are doing much to find it. All they do is like to cover it up. It is hard for me to even type, but daggomit, I have got to do something or I will lose my mind. I am in such misery that I burn like I am constantly using all of my muscles. I feel like they are continuously working out and I don't have to do anyting. It feels, like I have been in the Gym, but NOO..If, I even try to use them, they cramp,burn, ache and will be more sore, it will feel like I have been beat with a baseball bat or even so bad that I feel that I have been run over by a truck.Yell ..SO WRONG.I have even had times to where my leg will lock in a bent position and I scream to pull it back out or to straighten it.

    I truly believe that no one(docs, that is) wants to find the answer. They stick "Fibro" on us and send us on our merry..yeah...Away.They honestly feel that we are going to be satisfied with that diagnosis, but we know there is something far worse going on in there!! I have been diagnosed with Arthitis, as well.(Spondylosis and DDD of cervical,lumbar & Hip/joint). 

    I used to do anything I wanted to, but it has taken my life from me and I know it is hard on our family to truly understand the misery that we go through every single day, but it is VERY REAL and VERY HARD to go through and to not have someone to comfort us. If I didn't have my mom/dad...and a wonderful hubby, it would truly be unbearable. I am greatful so much to my son Bryan, who has helped me get through so many hard times. I love him so much and I do thank him.Kiss I must say that The Lord has been there for me at all times and He carries me most of the way. If I didn't have Him...I don't think I would have made it through this, at all.

     I pray that He will take this from us and let us have some of our life back. I hope so much that I can at least find what this has and that it is currable..mostly. I sure don't want to live like this...for I don't think that I can do it. I am strong, but this PAIN is so bad that I actually feel like it is going to kill me.

     Take care out there Dazzel60 and of course that goes for ALL of u guys, who are suffering and I pray that it be The Lords will that we are comforted and hopefully, we can find a way...back to our lives again, soon. God Bless always.:)))<3 skeet65Innocent

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Daisy, Community Member
11/26/11 1:08am

I let my dr keep me on bed rest for 5 years after my first big onset and I couldn't walk without severe pain. I felt like the longer I stayed in bed the worse it got. SO as painful as it was I made myself get up and stretch and yes, it felt like I was in dance school again times 20! But it did seem to ease up a bit. Have you had your potassium checked by chance? I had to start taking some potatssium suppliments and it did help with the cramps. Some of the meds I was on was sucking out all of my potassium. Or getting too much potassium will do it too. Once you get those horrible paralizing charlie horses it kinda leaves you with the feel of severely pulled muscles for weeks. The potassium helps. Try eating like at least 2 bannanas a day and some vitimin D. It helped me. If adding potassium causes you to hurt more, then find out what you eat normally that has potassium and cut back. I hope this little bit helps. I know its so frusterating. I am right there with you. Yes, the drs are just numb to the world and dont help like they should. Its sad that we are just slapped with a label and herded out. I personally think that Fibro is going to be the next disease that is severly over diagnosed and hiding something much worse. :(

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TATORBUG, Community Member
7/ 6/12 1:19am

AMEN TO THAT SISTER..I HURT SO BAD NOW, IT IS LIKE THE FLU THEN SOME DAYS I MAY NOT BUT IT WILL LAST FOR DAYS AND IT HURTS...YOU CANT GET UP, YOU CANT WALK GOOD, I AM 49 AND TRYING TO GET SOME DOC TO LISTEN...I HAVE BEEN TO PAIN MANGEMENT NO HELP, REBLITION,SHOTS IN BACK, MED AFTER MED, SAID I HAVE ARTHIS, FIBORMIALGIA, BUT I HAVE HAD 3 BACK SURGERYS IN 1YR 2000, BRAIN ANUERSMY,2007, I WILL BE GOING TO ANYOTHER SPINE DOC. SOON...WHAT CAN IT BE? HELP THE PAIN IS TO MUCH

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Daisy, Community Member
11/26/11 1:09am

I let my dr keep me on bed rest for 5 years after my first big onset and I couldn't walk without severe pain. I felt like the longer I stayed in bed the worse it got. SO as painful as it was I made myself get up and stretch and yes, it felt like I was in dance school again times 20! But it did seem to ease up a bit. Have you had your potassium checked by chance? I had to start taking some potatssium suppliments and it did help with the cramps. Some of the meds I was on was sucking out all of my potassium. Or getting too much potassium will do it too. Once you get those horrible paralizing charlie horses it kinda leaves you with the feel of severely pulled muscles for weeks. The potassium helps. Try eating like at least 2 bannanas a day and some vitimin D. It helped me. If adding potassium causes you to hurt more, then find out what you eat normally that has potassium and cut back. I hope this little bit helps. I know its so frusterating. I am right there with you. Yes, the drs are just numb to the world and dont help like they should. Its sad that we are just slapped with a label and herded out. I personally think that Fibro is going to be the next disease that is severly over diagnosed and hiding something much worse. :(

Reply
Daisy, Community Member
11/26/11 1:09am

I let my dr keep me on bed rest for 5 years after my first big onset and I couldn't walk without severe pain. I felt like the longer I stayed in bed the worse it got. SO as painful as it was I made myself get up and stretch and yes, it felt like I was in dance school again times 20! But it did seem to ease up a bit. Have you had your potassium checked by chance? I had to start taking some potatssium suppliments and it did help with the cramps. Some of the meds I was on was sucking out all of my potassium. Or getting too much potassium will do it too. Once you get those horrible paralizing charlie horses it kinda leaves you with the feel of severely pulled muscles for weeks. The potassium helps. Try eating like at least 2 bannanas a day and some vitimin D. It helped me. If adding potassium causes you to hurt more, then find out what you eat normally that has potassium and cut back. I hope this little bit helps. I know its so frusterating. I am right there with you. Yes, the drs are just numb to the world and dont help like they should. Its sad that we are just slapped with a label and herded out. I personally think that Fibro is going to be the next disease that is severly over diagnosed and hiding something much worse. :(

Reply
Daisy, Community Member
11/26/11 1:10am

I let my dr keep me on bed rest for 5 years after my first big onset and I couldn't walk without severe pain. I felt like the longer I stayed in bed the worse it got. SO as painful as it was I made myself get up and stretch and yes, it felt like I was in dance school again times 20! But it did seem to ease up a bit. Have you had your potassium checked by chance? I had to start taking some potatssium suppliments and it did help with the cramps. Some of the meds I was on was sucking out all of my potassium. Or getting too much potassium will do it too. Once you get those horrible paralizing charlie horses it kinda leaves you with the feel of severely pulled muscles for weeks. The potassium helps. Try eating like at least 2 bannanas a day and some vitimin D. It helped me. If adding potassium causes you to hurt more, then find out what you eat normally that has potassium and cut back. I hope this little bit helps. I know its so frusterating. I am right there with you. Yes, the drs are just numb to the world and dont help like they should. Its sad that we are just slapped with a label and herded out. I personally think that Fibro is going to be the next disease that is severly over diagnosed and hiding something much worse. :(

Reply
elbuzz, Community Member
1/23/12 3:25am

I just woke up and could hardly pull myself out of bed, literally! This has been slowly progressing over years.  The past year has been the worse.  I have been diagnosed with a pinched nerve in my spine at L4 and L5 and received steroid injections with some relief at the time but that can't be causing all this pain. The pain from lying on a joint at night is like a knife.  It takes forcing myself to move to get up.  My knees hurt, my fingers hurt, and now its my shoulders. I am an RN, ALL THIS FROM A NERVE IN MY BACK?  It doesn't make sense. I've seen an orthopedic doc, a rheumatologist and just had nine pages of lab work done, nothing.  I also had a very low Vit D and was treated.  Now that is normal but no lasting change in the pain.  I was interested in the fact you had the purpura or bleeding under the skin, not like a bruise, more like a blister.  I've had that too.  I was told it was due to the nsaids I was taking.  Haven't taken any for months but still has the purpura.  I have no diagnosis,  but an going to a pain management doc.  They are treating the pain like it is all from this nerve in my back.  He says it is probably in my neck also so is treating me for this.  I believe thats crap but no one can find a cause. I am in my 50's but like hell. The fatigue, depression etc is just an added bonus.  Feel like a junkie and no one can help.  I need to work or starve and this is getting harder and harder to do.  Thanks for listening.  You're probably the only one.

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Worried Wife, Community Member
1/26/12 7:16pm

Maybe you should try a Lyme literate doctor.  If there is any possibility at all that you have been exposed to Lyme disease through a tick bite or mosquito bite, then see a doctor who is not afraid to talk about Lyme.  Your symptoms sound exactly like my husband's.  Don't let anyone tell you that you had to have the bulls-eye rash;that only occurs in about half the people infected.  My husband is now being treated for Lyme Disease and he is finally getting better.  Fortunately, he has only been troubled with this since the first of November, 2011, unlike many who go for years without an answer to their health issues.  My husband is also taking mega-doses of vitamin C.  He started that on Monday and believes it is also helping him to feel better.  A couple of websites you might want to check out are:  http://lymeproject.com and lymediseaseassociation.org.  I hope you find some answers.  As the wife of a very active, strong, and vital man who suddenly came down with your symptoms, I fully understand your frustration.  I hope you feel better soon.  

 

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Worried Wife, Community Member
1/26/12 7:17pm

Maybe you should try a Lyme literate doctor.  If there is any possibility at all that you have been exposed to Lyme disease through a tick bite or mosquito bite, then see a doctor who is not afraid to talk about Lyme.  Your symptoms sound exactly like my husband's.  Don't let anyone tell you that you had to have the bulls-eye rash;that only occurs in about half the people infected.  My husband is now being treated for Lyme Disease and he is finally getting better.  Fortunately, he has only been troubled with this since the first of November, 2011, unlike many who go for years without an answer to their health issues.  My husband is also taking mega-doses of vitamin C.  He started that on Monday and believes it is also helping him to feel better.  A couple of websites you might want to check out are:  http://lymeproject.com and lymediseaseassociation.org.  I hope you find some answers.  As the wife of a very active, strong, and vital man who suddenly came down with your symptoms, I fully understand your frustration.  I hope you feel better soon.  

 

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painful in seattle, Community Member
5/16/12 9:23pm

I have fibromyalgia and Sciatica. I have pain from my neck to the bottoms of my feet. The fibromyalgia has gotten worse over the years. Now my doctor diagnosed it as severe fibromyalgia. Fibromyalgia causes painful swelling of the muscels and connecting tissue. everything hurts. My hands, feet and so on. when I get up I can hardly walk because of the pain. It minimizes after a little while. I have stiffness, fatigue, popping joints. My symptoms started when I was 35 years old. I didn't know what it was then but I really did hurt. Like I said, its worse now. It is very dibilitating. I have good days rarely. I hurt so bad sometimes that it brings tears to my eyes. Yes, I also have depression. I tried Lyrica and I had an allergic reaction. I tried Cymbalta. I had bad side effects. They have me going to Physical Therapy and all it does is make it worse. The only thing that I found that helps is taking hot showers and resting alot. On my good days, I try and get some walking and stretch exercises in. It dosn't fix it but it helps. I try not to over do because if I do then I am down for 2 or three days. All I can say is, your symptoms are those of Fibromyalgia.  As for medication, I am on antidepressants and for pain I take aleve. I wish I could have something stronger but they wont prescribe it because those kinds of meds are addicting. I hope I helped you. You can get fibromyalgia at any age.

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chan, Community Member
10/21/12 11:59pm

Hi, I am exactly undergoing the same things you had mentioned, did you find any relief..whatever was in my mind you had posted it..I am really tired of all these lab test. I tried Cymbalta gave very bad side effects. really scared to try any new medication. Can you please tell if you find any alternatives?? Thank you soo much, getting very tired, and very depressed.

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r.silburn, Community Member
9/ 3/12 10:03pm

Jesus is listening,ask him to come into your life and start reading the Bible, He will help you Signed Someone else that is listening

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Tree man, Community Member
9/28/12 11:20am
Hello everyone in this pain, I suffer from it to and it sucks so bad. I have to been to Every doctor and they say the same or it's in your mind but there so wrong. I think it Is a under lie infection which is attacking the nervous system slowly. I personally think It's sexually transmitted and its a part of HIV I will be going to a infection disease dr. Maybe They can help me but maybe we all can do that. Good luck Reply
victim, not a junkie, Community Member
1/15/13 1:01am

I'm here too!!! I have all you described and some!!! I left my pain-mngm. Quack after one year and 2 surgeries, and on a high pain medicine dependency dose. I have a SCS (spinal cord stimulator) that didn't do anything (ever), and is now in a way of my getting MRI done, so my new doctor could figure out what is really wrong with me... Meanwhile, every day is another challange, I am feeling worse with an alarming speed, and at this point I'm truly afraid. The pain is everywhere: all joints, including fingers, toes, etc., muscle cramps and spasm, I've started dropping objects (pens, forks, etc.,), no feeling in my feet at all (except for severe shooting, burning, electric shock like pains, where I simply scream like a dying animal). If I do sleep, it's sitting upright on a couch, walking with a cane - it's a good day, and I'm only 43, fromerly active, health person... I need high doses of pain medication, and I am faced with a constant problems with pharmacysts and an insurance, where, somehow, these people are all trying to be a "police" and tell me how much and when I should take my medication, where is my medication  is like an oxygen for me... 1 hour in "my shoes", not even a day, 1 hour - I would like to see how any of them would be able to "hang on, and wait couple of days until we figure it out"... I am an invalid!!!!!!!! ...not a dealer, or a junkie... 

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Magaly, Community Member
1/22/13 10:21pm
Hi just reading your stories make me feel than I am no alone. i am 54 yrs old, I couldn't get up from bed at all. I had pain in one knee, my left elbow, my shoulders and my hips. The rheumatologist put me on medrol and help a lot. I am still on 4 mg of medrol (cortisone) . But doesn't have a diagnosis. Reply
lotta pain, Community Member
1/24/13 9:39pm

I called e.m.t. the other day,i was having all over muscle cramps.

To give you back ground i have ddd degerative disk disease,bulgging disk,and pinched nerves in lower back that control my bladder,ive had gastric bypass,i have vitamin d defency,and carpel tunnel in both hands,degenerated cartiledge in my right knee..im33&mom of3. When e.m.s. was called i was cramping so bad my husband was panicking i was screaming louder than when i gave birth.i couldnt walk to our truck.I had pain meds and muscle relaxers so by the time ems got there i let them check my b.p.168/110and let my husband take me to our dr.who pulled blood .I had had my stiches removed the same day from carpel tunnel surgery. drs office said i had sugar in my urine,but today dr said white count was16,000 and a1cwas normal.I have emince bone and joint pain,i was told due to vitamin d defency,i hope for answrrs soon.

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lotta pain, Community Member
1/24/13 9:56pm

must add my urilogist sent me to my neurologist,they had thought m.s.back in 2010..,after a brain and lower back mri half my problems were found...im so tired and week,physical theropy said my right side was50%weeker and im right handed..lol my right leg isnt wanting to unlock,muscle is so tight..prayers please

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suefranlore, Community Member
3/30/14 10:41pm
Look up babesia macroti or babesia wa-1. You have the red dots and the symptoms. See a reputable lyme literate physician. Reply
Patticake, Community Member
4/22/12 9:44pm

Hi, this is what my older sister has been experiencing since she was 9 yrs. old.  She is now 65.  What she found out is food, vit suppliments, nutrition mixtures plus gluton, and milk allergies.  She developed an over active immune system which has disolved and atrophied most glands and organs including the brain which has big holes in it.  She finally found a terrific Dr. that is giving her cancer meds which seem to be the treatment so far.  They found that her body, even her sweat was disolving her.  My uncle had something like it also, now my daughter that is 45 is experiencing some of the symptoms. Their skin is very fragile and tears easily.  I found that in my case, getting off or lowering medication combinations and stopping all vitamin and nutritional shakes and energy drinks, plus no wheat products has gotten rid of most problems. I found out that by the time I took my vit. suppliments, protein and energy drinks anded to the fortified foods I consumed I was in toxic levels. Everytime you take meds. foods and combinations you can overdose your body. Read and research everything, and when you get a new RX, eventho you think it should be ok, research it out to the fullest. Don't let the Dr.s give you an RX unless you start at the lowest possible dose, then slowly increase with your Dr.s knowing your plan. MORE IS NOT BETTER.  If you discontinue a med then start back on it, do so at the lowest level again. In 2000 my neurologist and another Dr. had me on 23 pills a day, now I'm down to about 3 1/2 to 4 a day and the symptoms of MS and Parkinson's, severe jerking, severe pain, nightmares, daily suicidal desires (the Neurontin) have totally gone away.  My prayers for all of you is to be able to find what is causing the pain and problems and get the relief you need.  I will say that my faith in my Lord and His Son Jesus was the only thing that kept me going.

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Emmabemma, Community Member
5/24/12 1:24pm

I don't begin to know what you have but I am very sorry for your pain. My 25 year old daughter has been hit with this pain for the last two years and we have been trying desparately to diagnose it. When you talked about skin that tears easily, I thought that I should write you and tell you to look into Ehlers-Danlos Syndrome which might fit. There are different types of Ehlers-Danlos. I believe that my daughter's is Type III Joint Hypermobility. Ehlers-Danlos is a genetic disorder which is why so many family members may be experiencing the pain. Good luck.

 

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horacethecheese, Community Member
4/29/13 5:33am

oh tht sounds really severe!  used to get leg cramps and tok mgnesium for them. my symptoms were far milder would wake up with hands like claws general tiredness joints etc.  thankfully never severe. i decided to look at website with alternative treatments nd dvice from other sufferers who were managing their condition and i changed my diet and started doing yoga or relaxation techniques..most f pain is fear of pain and tension on top of the inflamation. it helped me cmpletely reverse what was happening over a ew months however ive let  lot ofdiet slide and symptoms re returning so i m going back on the diet again. i think i read it from patrick holford..who is considered  quack in mainstream but i found a lot of it made sense about your nerves cheilds breking down and since it helped and did no harm its  probably worth looking into. i also fund cabbage juice really helped wtih swelling of joints...considering teh severity you might need a lot! but it cnt do  any harm to try i hope you can get ut of ebd and get moving ecuase that will help as well if the muscles build up the toxins ti gets worse. movement and massage stretching etc can relly help. i know a lady who has to do a lot of excersise every day or her bdy seizes up i dont know what she has but if seh doesnt keep moving her muscles lock up. magnesium relaxes teh muscles too. hope that helps some and really hope you get out tehre treat yourself to some nice experiences and nice people to support you:) 

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Grandma in Seattle, Community Member
3/12/14 7:25pm

hello all,

I am like most of you with the pain all over.

here is what I have been diagnosed with.
Fibromyalgia, degenerative disc disease, sleep apnea and siatica.

I have had 2 neck surgeries, 1 lower back fusion, 4 knee surgeries and 3 different mouth surgeries for my sleep apnea.

Please do not understand the pain I am in everyday and night due to all of these including my husband which he is always upset at me because I never feel like doing anything.

I feel like my life has been taking from me as I used to be the life of the party. People used to tell me that they wish they had my energy and I should bottle it and sell it. I was the mother that would be playing baseball with my boys and their friends in the back yard. I miss those days and wish more than anyone that I still could be this person. I cry all the time because I feel like I am going crazy and the people around me dont believe that I am truely in so much pain and so exshasted that I dont even tell them the half of what I am feeling because I dont like the rolling of the eyes that I get for a response. This is a different hurt that I feel everyday.

I have been employed by my company for 22 years. This year was the 1st time I have ever been in trouble because of my illnesses effecting my job.

My question is when do you know when it is time to retire and collect disablility? How do you do it and what steps do you take? I want to work but I think I am getting to the point where I am not going to last here mush longer and I dont want to be remembered as a lazy employee.

I am now a grandma and I so what to be the cool grandma that does everything with her grandbabies.

Any help is welcomed..

Thank you
Grandma in Seattle

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momma doc, Community Member
12/ 2/11 8:51pm

Hello.  I have had muscle pain and joint pain off and on for the last 3-4 months.  It has been accompanied by severe fatigue as well.  I am a chiropractor that practices functional medicine.  I know that my immune system is so compromised.  I am doing a leaky gut protocal to help balance my immune sytem and decrease the inflammation.  I practice with an integrative medical doctor and have seen him as a patient.  He is not concerned because the pain comes and goes every 3-4 weeks, but the fatigue has been more consistent.  My next step is to have another CBC w/diff, a Lyme's panel, RA screening and perhaps an enterovirus screening.  As I have been practicing for more than 12 yeasrs and I am confident I am following the best autoimmune/inflammation protocal, it is still frustrating and scary!  Just turned 40 and I feel like I am much older at times.  N

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skeetelmore65, Community Member
12/ 8/11 12:01pm

Momadoc, I thank u for giving me the test I need to have done. My last CBC was done June of this yr. and it showed I was Vitamin D deficient(level 19), pre-diabetic and my Cholesterol was elevated more than I like to see. Yes, it is very scary when most of the time, we can't do anything. My muscles hurt so bad that I have got to do something. I tried to reach, while in the bed mind u, to clean up my side table some. I couldn't do it, it wouldn't let me. First, it bothered me to just lean on my left elbow, but then it got to where the muscles in my arm just wouldn't let me reach IT would ache so bad that I would have to stop...in the middle of what I was trying to do. I couldn't finish it and I don't understand. I wad told by a friend of mine(Chiro) that from a surgery I had in '06(C5-C6 spinal diskectomy ACD & F) that I had a nerve that was placed into an opening and I had a screw that went through the plates...and it was put right on top of a nerve. I truly believe this Doc, he told me that he had so many hours of Neuropathy and he seemed sure that if I didn't get it off of the nerve, I would lose the use of my arm and leg muscles. It has been since '08, since he told me that and he was right, I am losing them and I can't get the NS (Doc that did my surgery) to take a good look in there. I mean, I wouldn't mind if he got a camera and looked inside. I have got to have something done and NOW, that Doc won't even see me anymore. I don't know what to do??..just sit...no lay here and wither away? I am scared and can't get anything done, it is like no one is listening to me anymore. What do u do then, when it seems u aren't being heard and need help? :((

I know this could possible that it is a autoimmune response, but his words keep echoing in my mind and I have so many symptoms that it makes sense too. So, what in the world should I do? What would u do? Melisa, momadoc and I know I am bad at names, but there was someone else, I am sorry. I have that symptom too..memory be-gone..:(

Take care everyone and I am so sorry that my posts seem to always be so long. I just am frustrated @ this and want some life that I can enjoy with my boys. I have to fight, we all do. Keep ur chin up guys, we'll make it.:))<3 KarenSmile 

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momma doc, Community Member
12/ 8/11 1:10pm

I am a chiro too like your friend.  Your D is too low.  It should be closer to 60.  It seems that if the plates are pressing on the nerve at C5/C6 that you would get localized problems along that dermatome, into your arm.  If it is compressing your spinal cord, that would present a different situation.  Sounds like you need to see another neurologist.  As your friend told you, there could be problems casued by the surgery, but I can not emphasize finding a new neurologist.  There have been case studies that have shown gluten causing lesions in the brain causing neuro symptoms.  Celiac can affect the brain, not just the gut.  Other inflammatory foods and your body's response to everyday exposures in the envirnoment can cause an imbalance with your immune system.  This can be explored with a functional medicine doctor while you are working with your neurologist.  

 

As far as myself, I just had a tooth extracted yesteday from a root canal that failed.  I kept saying something did not feel right since last April when I had the work done.  Viral symptoms every month.  Well it turns out the dentist left an instrument in my tooth that was poking out of the root into the tissue.  Well that could cause chronic inflammation, infection, and/or an auto-immune reaction. Once I heal form my surgery I will get blood work and begin the auto-immune program again.  I tried it last week, but I was not feeling better and my tooth really started to bother me.  My priority was to remove the tooth ASAP.

 

Again, everything I mentioned above can be explored with a functional medicine doctor.  You can contact Apex Energetics and ask for a referral for a doctor that has trained with Dr. Kharazzian's seminars.  Tell them Dr. Nicole Wallace from Torrance, CA referred you.  That is me.Smile  

 

I will keep you posted on my recovery.  I wish you the best and hope you find the support you need.  

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bridgett, Community Member
1/24/13 8:24am

did you uncover?  i'm curious.  i believe the main source of constant bombardment.  thanx bridgett

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Worried Wife, Community Member
1/ 1/12 4:02pm

About 2 weeks following a flu vaccination in mid October, 2011, my husband had a sudden and severe onset of pain in his knees followed by extreme fatigue.  The pain has migrated to most of his joints and the fatigue is overwhelming.  Less than 3 weeks before this hit him, he was a cemetery caretaker and used every muscle and joint in his body to do his work, with little pain.  Today, he is a virtual invalid.  He had all the blood work, including the test for Lyme disease, and the only abnormal result was his rheumatoid factor.  Without any xrays or further investigation, his doctor labeled him with degenerative joint disease.  I didn't know that would "attack" one in such a manner.  He is currently trying homeopathic supplements.  We shall see how that goes.  It is very difficult to watch such a vital human being suddenly become almost bedridden.     

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Mdr1963, Community Member
1/30/12 11:25am

Dear Worried Wife

I had this same thing happen to me in August of 2010 but it was after getting a shot.   I woke up with flu like symptoms and it progressed rapidly within two weeks from my hips to my knees (which both swelled 3 times the normal size) into my muscles my back, my neck and all over pain in my joints. This lasted about 4 months. Toward the later time I could barely walk, I used a can and my doctor worried I was headed for a wheel chair.  I was terrified.  I had every test, xray, ctscan, MRI and physical therapy, saw specialists and there was anything that could be determined as to what was wrong with me. 

 

It didn't get  better until my physical therapist recommended Cranial Sacral Therapy.   It saved me it took an addtional  3 months to get rid of the pain entirely  but the progress was amazing. Finally the pain is gone. 

 

Occasionally I have a flair in my neck and I now have severe creptis in my neck and my knees and one knee is now totally bone on bone.  I don't know what it was that caused this and now we, myself, the doctors and therapist chalk it up to an autoimmune response.   I have synthetic injections in my left knee every 10 months in order to live without pain.  Although my life is not what it used to be, I can no longer walk miles, bend my knees as before but compared to where I was I am significantly better.   I also have a pretty physical job and sometimes its tough to do but I get through.   I try to stay as active as possible, stretch often and if I see any sign of stiffness returning I am right back to my therapist for another session of CST.   Only certain therapists are trained to do it but it is painless and easy.  I relate it to acupunture without needles.  You can look it up on line and get great information and even some videos are on youtube showing how it is done.   There are some I found that seem a bit more exaggerated then others but know it works and I wouldn't be where I am today if I didn't give it a shot.  P.S.  this all started on my 47th Birthday I turn 49 this summer.

 

Hope it helps

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Worried Wife, Community Member
1/31/12 6:43pm

Thank you for your suggestion.  My husband is now being treated for Lyme Disease.  He started on oral antibiotics a couple of weeks ago.  He is getting better, but has a long way to go.  His fatigue has decreased, and a great deal of the pain is transient, moving from one joint to another and light, sometimes, while extreme at others. The doctor just increased his antibiotic dosage, so we are hoping he will be much better very soon.  We really thougt it was the flu vaccination, at first.  Then, we asked a doctor if present antibodies for Lyme was enough to show that he, in fact, had been infected (even though the lab didn't consider his test positive).  It was at that point that the doctor started the antibiotics.  I think we could have dealt with a stroke or heart attack better than this sudden onset of debilitating fatigue and pain for a man who was very strong and active.  At least we would have had a point to start recovery.  I hope you remain optimistic and continue to heal. 

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Tree man, Community Member
9/28/12 11:44am
Hello so how is he doing? I was thinking that maybe this is a treatment for this The Lyme disease sounds right and the treatment can't hurt maybe it will work. Tks Reply
Worried Wife, Community Member
9/28/12 3:10pm

He completed a 4 month regimen of Doxycycline, and he self-treated with Tincture of Teasel as recommended by an herbalist's article in a health newsletter.  As often as he felt up to it, we created a sauna in the shower and heat treated the little buggers.  (They don't like heat.)  We also got a weight machine and, as soon as he felt up to it, we worked out for a couple months, which helped rebuild his muscle strength.  He is no longer a 90 lb. weakling, and he feels well most of the time.  Due to his age and the overuse and abuse of his body, he still has his aches and pains, but the severe knee pain, extreme fatigue, and muscle and body aches have improved drastically.  In our area, we have recently heard of several people having tick-borne diseases, including Lyme.  Now, West Nile is wreaking havoc.  It's a good thing the government outlawed all those pesticides because they caused cancer in California.  I'm sure many people have been saved from that only to succumb to another disease.  Thank you for asking about him. 

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Tree man, Community Member
9/28/12 11:44am
Hello so how is he doing? I was thinking that maybe this is a treatment for this The Lyme disease sounds right and the treatment can't hurt maybe it will work. Tks Reply
kat, Community Member
3/19/12 1:32pm

I have  MAC lung infection right now and am fighting symptoms of a similar manner.  Might want to investigate that.  It is caused from inhaling Non TB Microbes usually related to peat, water being sprayed etc...  the other suggestion comes from experience also: if he has has any kind of injury: thorn, cut, etc... there is a fungal infection called" sporotrichosis that I had from a rosebush thorn pricking me.  None of my joints worked before it was over with, and all I needed was a strong antifungal orally.  the MAC infection causes severe joint pain and fatigue, but by the time I got a doctor to listen and test for it I was severely compromised.  I had to lie about y age just so they wouldn't write it off as menopause! truly! good luck... I am still struggling and initially I was an outdoor instructor, an artist, and a mom.  I barely can get through the day.

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kat, Community Member
3/19/12 1:35pm

I have  MAC lung infection right now and am fighting symptoms of a similar manner.  Might want to investigate that.  It is caused from inhaling Non TB Microbes usually related to peat, water being sprayed etc...  the other suggestion comes from experience also: if he has has any kind of injury: thorn, cut, etc... there is a fungal infection called" sporotrichosis that I had from a rosebush thorn pricking me.  None of my joints worked before it was over with, and all I needed was a strong antifungal orally.  the MAC infection causes severe joint pain and fatigue, but by the time I got a doctor to listen and test for it I was severely compromised.  I had to lie about y age just so they wouldn't write it off as menopause! truly! good luck... I am still struggling and initially I was an outdoor instructor, an artist, and a mom.  I barely can get through the day.

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Worried Wife, Community Member
3/19/12 2:12pm

My husband is finally feeling better.  He is on his second 30-day regimen of oral antibiotics.  I think the warm temperatures have helped, too.  He is not completely healed, but he has fewer bad days, lately.  He stopped losing weight and began to rebound a tad, also.  He still has some healing to do, but at least he makes it through the day much better now.  A fungal infection would have been very likely for my husband.  We cleared some land of trees and brush and under them was damp leaves and bird droppings.  He wouldn't wear a mask to filter the small dust out.  But, he had multiple tick bites, as well, and his Lyme test showed antibodies for it, though they weren't as high a number as to register positive (which I don't understand).  He has increased his vitamin C intake to support his immune system and that has helped.  I hope you recover very soon.  The type of illness that you and my husband, and many others, suffer from is frustrating for those with the illness and those who love and care for you.  It's hard to find a place to start the healing process.

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Worried Wife, Community Member
1/ 1/12 4:04pm

About 2 weeks following a flu vaccination in mid October, 2011, my husband had a sudden and severe onset of pain in his knees followed by extreme fatigue.  The pain has migrated to most of his joints and the fatigue is overwhelming.  Less than 3 weeks before this hit him, he was a cemetery caretaker and used every muscle and joint in his body to do his work, with little pain.  Today, he is a virtual invalid.  He had all the blood work, including the test for Lyme disease, and the only abnormal result was his rheumatoid factor.  Without any xrays or further investigation, his doctor labeled him with degenerative joint disease.  I didn't know that would "attack" one in such a manner.  He is currently trying homeopathic supplements.  We shall see how that goes.  It is very difficult to watch such a vital human being suddenly become almost bedridden.     

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kat, Community Member
3/19/12 2:41pm

would like to add that the test for confirmation of MAC lung infection is a CT scan that can show granulomas in the lungs similar to TB and also a culture taken from inside the lungs.  Both of these confirmed my initial illness and glad for it as I was dropping weight and literally dying before my own eyes. It is crucial to get the correct antibiotic chemotherapy or you will not get well and can not recover.  a good site to go to for answers is: <http://books.google.com/books?id=5zd_W_PUwvYC&pg=PA832&lpg=PA832&dq=side+effects+of+chemotherapy+for+MAC&source=bl&ots=SUAlyv3PaE&sig=mABgsHbWr4Qg93Sc7nSaaqvtvAs&hl=en&ei=juFdTdrTKoP98AaG05mKDA&sa=X&oi=book_result&ct=result&resnum=6&ved=0CEQQ6AEwBQ#v=onepage&q=side%20effects%20of%20chemotherapy%20for%20MAC&f=false>

 

and also: http://maclungdisease.org/  this one contains really accurate information and you can call the center

good luck

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Worried Wife, Community Member
3/20/12 3:45pm

In December of 2010, my husband had an x-ray of his lungs.  He had been exposed to asbestos the previous year, so he was getting a yearly lung check.  They did find granulomas in his lungs but said it was nothing to worry about.  We had another doctor to look at the report, and he looked at my husband like he was crazy and reiterated that there was nothing there to worry about.  He didn't look at the x-ray, just the report.  I am going to check out the link.  We may have been barking up the wrong tree all along.  Thank you.

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Flushot illness, Community Member
5/18/12 10:49am

In response to Worried wife;   I'm not sure about that, but wish you much luck indeed. I feel so much for your husband and your family.

I just want to let you know that I'm (sorry, not NOW !), I WAS a totally fit person...on no medication whatsoever.... till I had the flu injection (against my wishes, but I had to have one for entry into the US)...and ever since then I have had incredible joint and muscle pains that go from one part of my body to the other, together with a lot of fatigue.   I tried accupuncture (that is my normal 'medication', should I need it), it hasn't worked. I am about to go today to get homeopathic medication to cope with all this, as well as try some other natural means to get my body over this crisis....and crisis it certainly is.   My symptoms started within 4 hours of the injection, (I had to go to bed for 24 hrs after the injection as the pain was so bad )and  my symptoms have included extreme dizzy spells two weeks after.   I had the injection about at the end of November, so that means I'm into month six now.   The pain is terrible and I too have a high pain threshold.   This whole thing need some serious investigation by the authorities.  I will let you know what I am trying and IF anything begins to make me better.   It is as if my body is into 'fight' mode....

we'll see what happens in the next two weeks, & I'll post again.   

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Mary T, Community Member
11/26/12 11:08pm

I have had muscle and joint  ain on and off also since July ( 5 months) I have had all of the screenings you  spoke about as well as many many others  They only abnormal results were my liver enzymes both in the high 400s  -alternting with normal as my joint pain comes and goes.  Just curious.  Did you have any luck with a diagnosis?  I have not? Am getting very frustrated and tired.  I wish it was all inmy head.  Have resorted to asking docs if it coulod be psychological  I'll take any diagnosis as long as they can help me with some resolution.

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Mary T, Community Member
11/26/12 11:08pm

I have had muscle and joint  ain on and off also since July ( 5 months) I have had all of the screenings you  spoke about as well as many many others  They only abnormal results were my liver enzymes both in the high 400s  -alternting with normal as my joint pain comes and goes.  Just curious.  Did you have any luck with a diagnosis?  I have not? Am getting very frustrated and tired.  I wish it was all inmy head.  Have resorted to asking docs if it coulod be psychological  I'll take any diagnosis as long as they can help me with some resolution.

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tiredofbeingtired, Community Member
3/ 3/12 10:13pm

I am 41 years old, I have been going thru hell for 2 and a half years now. It started with pain in my hips and then it got carzy. Loss of continence, dizziness, pain everywhere, stiffness, bruising, swelling, hair loss, exaustion. I have now been diagnosed with RA, anemic, b12 deficient and fibromialgia. I think all this is leading to something even more serious. Because now, I have been experiencing severe itching, headaches, muscle and joint pain. If I sit down just to eat for a few minutes Im in trouble when its time to stand up.Im exausted all the time, I am just worn out. I know they are missing something that will solve it all. But when??????

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kat, Community Member
3/19/12 1:42pm

keep saying they are missing something lol.  I am in the fight of  my life trying to get anyone to help diagnose similar symptoms.  I cant take the pain and I have an extremely high pain threshold...life did the natural childbirth thing in four hours...I can hardly move.  I was treated for  MAC lung infection and just finished the treatment one  year later... still not better and now everything hurts when I move.  honestly. doctors say its because of my age so I lied about that to get someone to look deeper and see if it might be something outside of the box, which it was.  But not well yet and thought I would be by now. I am a fighter but geeze I wish my doctor would treat this like: if you discover and treat me successfully I will give you a million dollars.  I am certain the answer would NOT be fibromyalgia!

 

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Misty, Community Member
7/23/12 4:14pm

i know its been a while but i just read this my doc rumatologist says fibromyalgia is a secondary dieses you are right there is something else the first cause.  Press the doctor for another answer

 

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BJ, Community Member
8/12/12 6:52pm

Been working with neurologist, orthopedist, rhematologist and family doctor.  Was first told I needed TWO hip operations. Next was medicine for arthritis (cppd) then shots (steroids )for pain.  Finally after I searched symptoms on internet for many hours and checked everything on Chronic Myofascial Pain.  I kept telling everyone  muscles hurt not my joints.  If you want to check a good source and almost a text  book order Fibromgia & Chronic Myofacial Pain.  It is with a PT and no surgery.  Find one that identifies himself or herself as acquainted with the treatment.  It is the first help I've seen for 2 1/2 years.

 

BJ

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Jennanicole, Community Member
12/31/11 10:29am
Melisa the advise was perfect. Whoever answered you read my mind. It could also be a virus. I swear I had west Nile about ten years ago but when I saw the rheumatologist nothing showed up.... Little did I know then that there is a 72 hour window fir the virus to show up. I saw the specialist only weeks/ months later. Mine started as a bad "flu" and I also had a rash on my tummy area for a few days. I was like an old lady for almost 2 years. Had trouble/pain walking my joints were affected. Then I got better. I do have Achy joints at times and at certain times of the month I LOVE ibuprofen. I hope you feel better. Reply
Mary, Community Member
7/ 8/12 11:16pm
Melissa, i know how you feel. They thought i had it too, but thought wasnt good enough for me. I just wanted relief. I tried all kinds of pills and ointments, diet changes, mild exercise. At times it might get better but not much. Nothing seemed to work until a friend had this stuff and let me try it. I cant remember the name cuz its a foreign name but they tag it as "Magic Juice, the Miracle in a Bottle!" Its amazing!!! It takes my pain away immediately and stays gone for hours and hours. The phone number for it was 4079824051. I keep that phone in all of my contacts lists as one of my most important numbers! I even have it memorized! Ha. Ive reordered several times! Its a clear liquid in a bottle that doesnt even leave a sticky or greasy residue. Ill never use anything else again. It really ended up being magical and a miracle to me. Good luck with your pain and relief. Reply
Get Tested, Community Member
10/ 2/12 9:30pm

My wife has has these pains and fatique for several years. She is 47. The pain got so bad she went to the ER and they did a MRI and found what they believe is boan cancer. Get tested to rule this out. I want to save everyone from what she is going through.

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jon, Community Member
10/20/12 1:30am

hi all..

I suffered the same. Stiff and pain all over. My wife had to lift me out of bed and put me in a hot bath. It started in my feet and went all over my body. 26 years old I lost my job house and wife all within a year due to this problem. Doctors could not help me I had all the tests. I think they thought I was a fake. It lasted for 18 months and then one day I woke up with no syptoms it was as quick as that every thing was normal. The only problem I have now is flexability is not as it should be and if I get stress I find a few days later my feet and toes go stiff and are painful. This only lasts a couple of days though. I have been told that chemicals from the brain during stress or depression can cause these effects with some people. Also I was told an infection in the nerve system could have been the cause. 10 years on now and I have a normal life it was all so strange and scary. A shame to hear similar stories I thought I was alone

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Irene, Community Member
9/ 7/13 3:58pm

My daughter also named Melissa, who is also 28 is going through the same thing had all kinds of tests and everything came back negative, even spinal tap. The doctors have admited they don't know and am sending us to a University hospital. The PT said she has poor capulary return, I noticed her toes are blue and swell up when she stands too long. The only relief she gets is minimal when she elevates her legs, she has not been able to sleep since she was released from the hospital. I'm worried about damage to her nerves and tissue of her legs, the university can't see her for a month. I'm going to have to call a doctor up there and see if they can't get her in sooner. She can't aford to be out of work any longer and the sooner they figure out what is wrong hopefully she can return.

 

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Carrie, Community Member
10/24/08 4:20am

I feel for you and your pain. However, please do NOT be so quick to discredit your doctors. The symptoms you describe herein, MIRROR TO A Tee the symptoms I experience (and have since my mid teens). For YEARS (unil I was 39 years old and I am currently 42), NO ONE could diagnois me. No doctor could put a name to the absolute ALL OVER body pain, depression, loss of not only flexibility but balance and coordination, chronic fatigue that I suffered everyday. The pain has also been the worst in my muscles (any muscle).  Something as simple and innocent as someone taking their index finger and poking me (say to get my attention or point at something the were trying to get my attention focused on?) on my upper arm would (and still to this day WILL) send me to MY KNEES in so much pain my world completely would SPIN and I would cry uncontrollably for hours on end as shockwave after shockwave of this pain rippped/rips through my muscles.  The simplest things like GETTING OUT OF BED, on some days almost take an act of God Himself for me to accomplish.  At the age I mentioned above, I had had ENOUGH of the medical professionals not being able to help me ease the pain. Had enough with them not even knowing what was causing this pain. And BEYOND had enough of them basically thinking everything I was "complaining of" was ALL IN MY  HEAD.  I went online and researched until my eyes could not focus anymore. But the minute I came across Fibromyalgia, I KNEW WITHOUT A SHADOW OF A DOUBT... WITHOUT A SINGLE QUESTION IN MY MIND, that was what I HAD, and what I had been suffering from since the age of almost 16. I printed out everything I could find, and I took it to my PRIMARY DOCTOR (who is a wonderful, caring lady, who had always sent me to specialists and tried to help figure out what this was I suffered from and never once doubted this pain was ... not only more than REAL, that is was  completely DEBILITATING me from living my life). She had heard of Fibro, but never read on it indepth .  She made me an appt in a few weeks, as she wanted to research and that she did. By that 2 weeks end, she had performed the most simple of tests that  just involves poking X amount of key PRESSURE POINTS on a body. She wrote down and listened for HOURS every symptom, pain, ache, etc I told her I experience.  And she then diagnoised me with what I had no doubt ... I HAD. Fibro. Please do not think they are full of it.  It is NOT a "made up disease". It is NOT because those of us suffering are LAZY or NUTS. It is because each day we must live with an all over BODY PAIN (from your mind, which suffers liasions from this disease, affecting not only your moods: but your balance), to things you never had any CLUE COULD ACTUALLY  HURT (such as FINGERNAILS), but DO. Some days the pains are so overwhelming as you mentioned, getting out of bed is as big of a challenge as asking you to run the NY marathon never having trained. Showering is a major cause of complete anxiety. Anticipating the pain you know you will experience when you continually drop soap and razors and shampoo etc, because the nerve endings in your hands are just about completely SHOT. I break out in a sweat hon, everytime I have to manage to bend from my waist to get those things simply so I can be CLEAN. And the total energy you expend trying to just go about a daily life, leaves a person with fibro so fatigued and tired, it is not soon before life altering depression takes over. The lack of sleep adds on to the pain, and the saddness felt at having to deal with feeling 150 when you are only 42 (or even 28), zaps more out of someone than I can tell.  If any of this sounds familar to you, I beg of you, listen to the doctors. Get a second or even third opinion!  In so many cases, Firbo and MS "MIRROR" each other almost to a T. Read up on both hon. Seriously be open to reading the stories of others like myself, and allow yourself to honestly evaluate .. is the things being described by Fibro suffers something that strikes a cord with you and makes you shake your head... YES. Yes that is how it is?? Because if so, please believe me.... nothing will change the fact you have Fibro if you do. But there are things to help.. the biggest is reaching out and reading, and knowing. You are not a hypocondriac, you are not a NUTJOB.  You are someone (like tens of thousands of men. . YES MEN, women, and CHILDREN .. yes even children!), who suffers from a life altering thing called Fibro.  The best "antidote" in the world for me, was finding comfort and support from those who understood the pain I live with everyday, that no one in my everyday circles, to this day, can seem to grasp. My hopes and prayers are with you that whatever it is Michelle, you are able to find out and get help.  I just implore you, be open to researching this disease with an open mind and open heart.  Everything you have described, hit home like a ton of bricks with me.  Peace and Love, Carrie

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frogeyd7, Community Member
9/ 4/11 9:54pm

I feel like you are my twin sister. I was diagnosed last Aug 2010 with Fibro by a Workman's comp doctor after complaining of severe neck, arm, hand and shoulder pain.  Then I took my information from the Workman's Doc and told my PCP who wasn't 100% convinced and said if it was Fibro, it would be a diagnosis of elimination even thou I had tested positive for 11 trigger points.  Then my PCP sent me to a Rheumy Doc and he was pretty sure that was it too.  At one point my hips started to hurt so bad - I actually had trouble walking or laying down, or sitting, just about anything - so I got Lidacaine shots in my hips and felt sweet relief.  My doc put me on Savella 200 mg a day and it really has helped.  He said if it was Fibro I would feel better in about 2 weeks and he was right.  But I still get flare ups and when they happen I feel like someone just ran me over with a Mac truck and no one can seem to understand how much I hurt. That poking thing bothers me too and my family tease me and call me "super sensitive" but I actually really hurt.  I'm not a baby when it comes to pain - I have had 3 children all natural.  If feels just like you said, instead of feeling 44 I feel 144.  I'm having an episode now and so many different parts of me are in pain I would sound insane if I tried to describe it.  I really feel for the lady who hasn't gotten a proper diagnosis.  I concur with Carrie keep pounding the pavement for a clear diagnosis and your not crazy or a hypo - this is a horrible condition and somedays it's truely unbearable.  Peace, Liza

 

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bridgett, Community Member
11/28/11 1:10pm

fibro is a symptom of  an underlying dis ease.  did your doc figure out what the dis ease is or just covering up the fibro symptoms?  

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painful in seattle, Community Member
5/16/12 9:55pm

Hi Carrie, I am glad that you could explaine this disease better than I. I had been diagnosed with Fibro 5 years ago. I will be 53 next month. I have had this pain since I was 35. My family still have hard understanding fibromyalgia. Having a support group would be good. My daughter thinks I need to go back to work and get involved with volunteering. I would love to be able to go back to work or volunteering. The problem is the daily nonstop pain I have. I need to lay down most everyday at least for a couple hours. I do a lot of sitting because walking kills my feet. I have severe fibromyalgia. It is a real disease and I wouldn't wish it on anyone. My cousin's husband has real bad and they prescribed vicodin for him. I take aleve but it don't aleve the pain. I have tried everything and nothing works. I have now come to relize that I will have to just live in pain for the rest of my life. Not a fun thought but I do have to try to keep going the best I can especially on my "good days".

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painful in seattle, Community Member
5/16/12 9:55pm

Hi Carrie, I am glad that you could explaine this disease better than I. I had been diagnosed with Fibro 5 years ago. I will be 53 next month. I have had this pain since I was 35. My family still have hard understanding fibromyalgia. Having a support group would be good. My daughter thinks I need to go back to work and get involved with volunteering. I would love to be able to go back to work or volunteering. The problem is the daily nonstop pain I have. I need to lay down most everyday at least for a couple hours. I do a lot of sitting because walking kills my feet. I have severe fibromyalgia. It is a real disease and I wouldn't wish it on anyone. My cousin's husband has real bad and they prescribed vicodin for him. I take aleve but it don't aleve the pain. I have tried everything and nothing works. I have now come to relize that I will have to just live in pain for the rest of my life. Not a fun thought but I do have to try to keep going the best I can especially on my "good days".

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Lisa E., Community Member
3/ 1/09 9:56pm

I had your same problem. I strained my lower back playing tennis. I was in bed for a week. As my pain subsided, I started to get severe stiffness in my legs especially in the morning. It was as if my muscles were shrinking around my bones. when the pain spread to my hands and I had to take Celebrex, I really got scared. The muscles in my legs started to become weaker. I felt muscle fatigue just walking to the second floor in my house. It was as if my leg muscles were deteriorating. I tried physical therapy, but it did not help. In physcial therapy I was doing a lot of stretching.

 

Doctor and doctor could not figure out what was wrong. Finally I went to one doctor and he told me I need to exercise. And in fact that is what cured me. What I found is that fully training the body with weights works!

 

I started out following Gilad's programs on TV (Bodies in Motion and Body Sculpting). He does a lot of good warm-ups, especially for the back. At first it was hard. My thighs were get tired pretty quick. then it got better. Soon I started going back to the gym. I am now in a weight training class (free weights) with a trainer. I lift heavy weights (like Body for Life system). I find that many exercises - especially upper body engages my back muscles. So I slowly strengthen my back and all muscles around it. By making the rest of my muscles strong, I put less pressure on my back to perform daily movements. I RARELY DO BACK AND AB EXERCISES. This only irritates my back.

 

Other things I did that really work...

I soak in warm water with epsom salt at least every other day.

 

When you can... 

get back massages and vichy shower (7 head shower) which works GREAT to encourage bloodflow to you back muscle which helps repair muscle.

 

I now do not suffer the severe stiffness. It is only slightly stiff.

 

Hope this helps anyone out there who suffers the way I did.

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ddel327, Community Member
4/15/09 2:28pm

Did they check for Vitamin D deficiency?  They diagnosed me with Fibro and I still think that it is crap too but they did find a Vitamin D problem.  I am on high doses now hoping this will make the extreme pain go away but am not totally hopeful since only a year ago I was completely active and this hit me.  I think that they just say Fibro when they don't see anything to indicate what is wrong on your blood and just resort to that.  I do not have all the symptoms and it took him 5 minutes to diagnos.  I see this is a while ago but hope you have found some relief and let me know if you have found out anything else because I would love to have some other ideas about what is wrong with me.

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Daisy, Community Member
11/26/11 1:16am

I am like you with the vitimin D deficientcy. My neuro keeps trying to test me for Lupis... Apparently, it is tricky to catch even with blood tests and causes a lot of the symptoms that fibro causes. I dont think I have fibro either and was extremly active until I got struck with sickening pain. Now my body is literally deteriorating. Has the vitimin D helped you?

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Mulberry02, Community Member
5/ 4/09 6:38pm

Melisa, I feel for you. I have been living with muscle pain now since the fall of 07. The pain seems to travel to different parts of my body, but mostly hurts in my legs and now my wrist. I have been diagnosed with Fibro, but have went to specialist to make sure including Neurologist, Rheumotogist, and a Endocrinlogist. I did  not want to accept the diagnosis of Fibro because I feel it is a catch all diagnosis. The only relief I have discovered is a hot shower, or tub whirlpool. I have so much difficullty staying awake though that I often fall asleep in the recliner.

I also have to say that I have diabetes, low thyroid, high blood pressure and high tryglycerides. I also had a complete hysterectomy. Some how I think it is all connected, but even the experts cant figure it out.

God Bless You and good luck.

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Jang, Community Member
10/28/11 5:01pm

oh my god, I have the same symptoms with extreme fatigue that is dibilitating,even burning behind my eyes, all over my body, even in my head. All of this started after a partial abdominal hysterectomy. They left my ovaries, fallopian tubes and cervix. No one can find out what is wrong, and I have flare ups that are aweful, make me scared to be home alone with my kids, can barely get up because I cant even hold my arms up very long and they start burning so bad that I have to put them down, almost like when you workout and you use weights and when you do a certain amount of reps your muscle will start to burn and you have to stop. although I havent dont anything, all the muscles in my body just feel soo fatigued. If you ever need to talk, call me 720-288-9321 My name is Jan, I am married and have 2 kids. I have been dealing with this for almost 2 years now and its sooo scary every time I get it. Hope you feel better!!!

 

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victoria9689, Community Member
10/29/11 7:28pm

Oh, Jan.  You describe my symptoms exactly.  Mine started with an out of the blue bout of pancreatitis.  The docs never figured out why I had it, and Ive never had it since.  After that, I had severe all over burning pain, muscle pain, bone pain, extreme fatigue. weird reactions to things.  Ive had so many nights that I call my "nights of hell" that Ive gone to the ER knowing that something had to be horribly horribly wrong where my body was burning and aching all over and my arms, legs, hand and feet felt like the bones were literally shattering, my muscles twitching and drawing up.  Im a really strong chick, with a high tolerance for pain. I had all my children completely natural... but this thing is almost unbearable. Trying to rest actually makes the pain and burning worse, its as if it intensifies. 

 

Now, six years later, the pain is on a slow burn very day, there is so much fatigue, but I have to keep going.  I see a rheumatlogist, neurologist, endocrinologist and a primary physician.  They call this a "lupus like" illness and throw steroids and pain meds at it.  Neither of them helps at all, so I dont take either of them.  I also have developed a high intolerance for almost all medications, preservatives, etc... My ANA is sky high, but everything else is normal.  Ive been like this for 6 years, and it hasnt gotten better.  The hard part is I have 4 children, and work an hour from my home.  Im the primary breadwinner in our home, so I have to be there for my family.  Some days its all I can do to get through the day, and collapse when I get home, only to sleep in painful fits until the next morning and do it again.

 

I do understand.  There are others out there who experience this, and you are not alone.  I pray that eventually someone will figure out what this is and we can have our lives back.  

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AmyJ, Community Member
11/ 2/11 12:42am

Jan -

you describe my symptoms to a T. I have been searching for anyone else who might experience what I do.  Have been having extreme muscle burning/fatigue since the birth of my daughter in 2006.  The episodes come after I have the flu or some sort of illness.  The symptoms last for 8 days and I may go months without an episode.  What are you doing to treat your symptoms and have you found a doctor that has provided any sort of explanation?

-Amy

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Daisy, Community Member
11/26/11 1:22am

I didnt get sick until after my partial Hysto either! Now I am sick as hell and my bady is degenerating so bad now that the drs said I had the insides of a 65 year old woman when I was 28! My hysto was at 23 or 24 and I am 33 now. Now I have all sorts of issues. My outsides look younger than they are... Its just my insides... I think all of this is really too much of a coincedence. One thing I have seen everyone has in common is a major surgery or spinal problems. That seems to be everyones starting point of illness too! Hmmm. I need to research diseases caused by surgerys?? Please feel free to email me and I will gladly swap contact info with you. I think we all need to work together to get answers. daisiesNdenim@gmail.com

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Daisy, Community Member
11/26/11 1:35am

OMG!!!! I found a site when I was researching diseases caused by surgery and stumbled on something that actually fits me perfectly from my asthma, to my guts, fatigue, passing out and pain!!! Even my back issues.... Check this site out and see if it help you at all? I am going to have my dr check me for it immediately!
http://www.netdoctor.co.uk/diseases/facts/hypoadrenalism.htm

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Jennanicole, Community Member
12/31/11 10:53am
Scary..... It hurt to read your post. Omg!!!! I have the sharp pains behind my eyes. I am to afraid to see doctor because I am afraid they will diagnose me with MS. Fibromyalgia means pain in the muscles. The diagnosis is real, the pain is real... But as others have stated, I also feel that fibromyalgia is a symptom of something worse. I have to admit that when I was on a diet cutting out ALL gluten, added sugar,bread, all pasta , rice , and most dairy with only some cream in my coffee.... I felt fabulous! After Jan 1. I will try this diet again... My father always said that milk is for baby cows and maybe he is 100% right! Less white food the better Reply
Redhawk, Community Member
5/21/09 1:49am

If you were/are "double-jointed" you might have Hypermobility joint syndrome. The joints "popping" are really your tendon snapping like a rubberband over your joint causing your joints to subluxate--partially dislocate. It is so bad for me that I cannot lift a full coffee cup with one hand.

 

If this is what you have, the "popping" is a warning from your body that you have/are overusing that joint. Sometimes overuse is just doing a normal actvity.

 

If your knees are subluxated, your ankles, hips, and back wil try to compensate to keep you upright, which eventually will cause injury or subluxation to those joints as well.

 

If your elbow is subluxated, then your wrist will compensate and eventually subluxate too. Of course, this can occur in the opposite order. Thus, your joint pain seems to migrate all the time.

 

Often this occurs with women around 40 esp. after pregnancy. The relaxin + hormones that relax the ligaments and tendons during pregnancy, compound the already hyperflexable joints/tendons/liganments.  The loose tendons and ligaments don't keep the joints in place.

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bobby, Community Member
7/ 2/09 1:42am

melissa-had similar issues when i turned 30, i was taking ibuprofen to get up and to go to bed, i bought a inverted hanging device made by weider at sams club, because my sister had mentioned that she uses one at her ciropractor and it really helped. i thought my pain was muscle generated but it must have been back alignment, the doctors i had seen treated me for arthritus and other various possibilities. it works for me for head aches-stiff backs-lack of mobility. i stand on a platform and hang up side down for 3 of 4 seconds three times once a day once or twice a week.

bobby

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Will, Community Member
8/ 1/09 10:11pm

I have exactly the same symtoms.  Now admitedly I am not young nor femail. But I have begun to suspect these symtoms are caused by a terrible nights sleep each night.  I believe I may have sleep apnia.  It seems to make sense if the body can not sleep properly at night then the body can not feel refreshed in the morning.

 

I have noticed also if I do breathing exercises during the day and night,  the muscle and joint pain drops more than 50%

 

So I am going to do the following:

Have my bedroom cleaned professionally

have a plastic cover put on my bed mattress

Get rid of junk in my bedroom to make cleaning easy

Do regular breathing exercises

And most important get a sleep study if my insurance will pay for it

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Tonya, Community Member
11/18/09 1:53am

Hi there,

 

I know you posted this a while back, but if you haven't already, please get tested for Lyme Disease, and do so through Igenex Labs in Palo Alto, CA.  You can get tested there no matter where you live.  If it comes back positive, find a "Lyme-literate" doctor ASAP -- there are only a handful of them in the country.

 

Best wishes.

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ginbug, Community Member
12/25/09 9:25am

Melissa,

 

I seriously think that you should do some research into Lyme disease.  I  just found out I had Lyme disease and by what you say, it sounds like how I felt.  If you have Lyme disease something IS literally eating you alive.  Unfortunately, the laboratory testing for Lyme is not always reliable.  I urge you to watch an excellent documentary called "Under Our Skin" and see if you relate.

 

I wish you the best,

 

 

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Elle, Community Member
1/ 5/10 10:37pm

Melissa, I would go see an alternative practitioner that is well versed in diet. You might be eating a healthy diet, but for your body it might not be healthy--gluten intolerance can create alot of physical issues...Good luck!!!

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Elle, Community Member
1/ 5/10 10:39pm

Hmm...have you been tested for lyme's disease? 

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Elle, Community Member
1/ 5/10 10:40pm

Melissa, I would go see an alternative practitioner that is well versed in diet. You might be eating a healthy diet, but for your body it might not be healthy--gluten intolerance can create alot of physical issues...Good luck!!!

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lumpalump, Community Member
6/29/10 9:54am

I think that any doctor who diagnoses somebody with fibromyalgia and considers that to be the finaly diagnosis is full of it. From what I have seen and also from what I know of my own body, fibromyalgia is a complex of symptoms. It is not a condition or etiology but rather just symptoms. Yes, those symptoms are debilitating, but that is all the more reason for a doctor to not just stop at the point of declaring fibromyalgia, but rather to know what things they have ruled out and to know how to ease the symptoms that are occurring.

Even after having been didganosed with RA (which is still a true diagnosis), I was told for many years by a different doctor who I think is probably the worst doctor I've ever had, that I don't have RA, but just fibromyalgia and then loaded up on so much lyrica that I could no longer function. Sadly, I was still in pain regardess of the amount of lyrica I took. Finally after going to a doctor who did a complete evaluation, it was found that I have a genetic collagen disorder on top of inflammatory arthritis.

However, if you ignore all of the joint, ligament, and tendon damage in the imaging studies and you ignore all of the other physical problems that could be seen and only went by tender point pain (due to torn tendons) and some brain fog (from the pain medications), then I clearly had a case of fibromyalgia. But the fibromyalgia was the result of another condition. The other conditions caused the complex of symptoms recognized as fibromyalgia. Fibromyalgia doesn't cause anything. Something has to cause it.

So, don't let any doctor stop at the point of saying you have fibromyalgia. I am sick of so many doctors not doing their jobs. Thank god there are a few who actually care about what they are doing.

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Colleen, Community Member
11/20/11 12:09am
That was VERY well said Lumpalump! I also experienced many of those symptoms for years and have been seen by many doctors, had several surgeries, tons of imaging test, blood test, etc. I was never misdiagnosed as fibromyalgia but never received answers or compassion either. I researched nonstop for almost 3 long years before I diagnosed myself with Ehlers-Danlos Syndrome. It has been confirmed by multiple doctors and I have to say, just knowing what is going on is medicine in and of itself. I am trying to do things as natural as possible and am hopeful I can increase the quality of my life soon. If anyone would like resources to read about Ehlers-Danlos Syndrome, email me at colleen1827@gmail.com and I will be happy to respond. Some of the info out there is better than others. Best of luck to all of you. Colleen Reply
marie, Community Member
10/27/10 9:17am

I am a female, 40 and I also suffer with this. It has been almost a year and a half now.I've seen 7 different doctors/specialists and NOONE can find ANYTHING! I've been told Fibromyalgia a couple times. It really angers me that when it seems they can't figure it out.....it simply has to be Fibro. The trigger points that they use to determine if that is it....don't even match up. But they still think it still could be "the worst case they ever seen"!? Now I get to go to PT, OT,and a Psyhciatrist!!?? But as she scheduled me for this she said ...."it's not because we think your nuts or anything". I'm not a "junkie"or a hypochondriac, nor am I a "nut". I too was perfectly healthy, and very active and one day.....BAM! I've been told that I have low vitamin D levels and also problems with my Thyroid. So I take meds for both. But still no luck! I was tested for Lyme. They have put me on EVERY med for fibro. at highest strength and THEY DON'T WORK! They only thing that works is "pain killers". I'm sooo sick of having this pain, sick of taking pain killers daily, sick of doctors, All I want is FIXED! Please if you do find out what is wrong with you, please share!

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Joan, Community Member
11/10/10 6:37pm

It's so reassuring to read everyone's comments.  My now 8 year old son and myself have had these symptoms since September 2008.  One of his specialists actually said "it's a virus, but it's gone now, only your brain doesn't think it has."  You know, it's strange enough having something that changes your life so much without the added bafflement to doctors comments.  What you have written above not only made me laugh (because I refuse to be labeled with such ridiculous diagnosis and comments - especially of the phycological kind), but I feel them drawing me into it and I'm kicking and screaming in my head, "No way.  Just research properly, diagnose accurately and then treat us.", but it has also given me an added boost to my confidence in continuing to say to them, what I have repeatedly said to them from the beginning, "Something is causing this."  Yes, I have symptoms because of it, but they are not the cause.  And it really needs fixing, so therefore, please find what is causing it.  But they are not even looking anymore, we are just left.

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Jennanicole, Community Member
12/31/11 11:03am
That's how west Nile virus works. It is gone out of the system usually before it can be diagnosed!!! Reply
Jannie, Community Member
10/28/10 2:33pm

I have the same symptoms.  I am 54 years old, and RA (rheumatoid arthritis) runs in our family.  When I was 43, I had this "episode" I have come to call them where I had the same symptoms you had.  The thing is, it only happened now and then, then they increased.  This year when I turned 54 and became menopausal I got worse.  One thing I know is you have to have a blood test to tell whether you have RA or regular arthritis.  Fibromyalgia is real, but there is no test for it, its a process of ruling out other things.  RA can come on and go also into remission just like the symptoms you described.  It can be quick onset like your symptoms were.  I am in the process of ruling out what is wrong with me, but I will tell you I started chiropractic treatments, and my pain is now down by 40 percent after only 3 treatments.  I also take OTC things such as osteobioflex, hyalruronic acid (sp)?? for joint ease.  BE ACTIVE, stay active.  Build up your immune system!  Keep looking for a solution.  I was about 2 month ago at the point where I could barely walk and having constant cramps in my legs and those episodes at least 1 to 2 a week.  With OTC meds, and chiropractic treatment, I can now walk fast again, hardly any cramps, and more stamina and energy.  Try chiropractic care.  Go to one who takes an x-ray first though before they work on you.  ITs great, been to them all my life, swear by them!  Hope this helps some.  DONT GIVE UP!

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Michelle McEwen, Community Member
10/30/10 12:02am

Hi, 

I have had all the same symptoms since 2006, went to the Rheumotologist, Neurologist, ortho surgeons, physical therapy, etc etc. 

My innitial diagnosis was fibromyalgia as well, i could not get out of bed, muscle and joint pain, insomnia, stomach problems, and i still have it to this day. I find that exercise regularally and drinking lots of fluids is best, but its kind of like you get flare ups like athritis, every moment is different. It affects everything. I am sorry for your pain, i am seeking out more medical help as well. They tested me for lyme disease too. I am going back to the docs to get tested for Multiple schlerosis, which the only way a doctor can find out if you have it via tests is white lesions on your brain through a brain scan, unfortunately it can take up to 5-10 years for them to show up on an mri or cat scan. So i will pray for you.

michelle

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caren, Community Member
10/30/10 10:04am

I have had the same. Started as forearm aches when using computer at work, and neck, shoulder tension..became progressively worse. I began to feel like my muscles were shortening as i slept. I have gone to many specialists-- having MRIs next week of cervical and thoracic spine. I am unable to maintain a "hold" on items, picking up, etc. although my strength is normal for muscle testing. My ROM is limited in neck, some shoulder. Pain changes..but always present to some degree. I am receiving PT for trigger points, myofacial release- which helps some. I am worried about losing more strength and function..I am single and live in the country- need to shovel, carry wood, etc. Have never had any issues in the past and I am 53. Did have period of significant anxiety at onset of symptoms- that is what i was originally attributing them to..has anyone received any correct diagnoses since posts?

 

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Jason, Community Member
8/ 2/11 1:40pm

Caren,

 

I have had the same onset of symptoms since my divorce some 2 years ago and after significant weight loss.  The muscle pain and the popping in the joints is the worst!  The Doctors have found that my Thyroid is completely non functioning, and I cannot produce Testosterone as well.  After being supplmented with both Testosterone and Synthroid...I feel about 80% better.  Have you had any luck? 

 

Jason

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loretta ayon, Community Member
10/31/10 10:19pm

Hi, I use to be able to work 14 hours a day sometimes but about 2 years ago I started having the same symptoms and sometimes I have to stay off work a day or 2 and sleep because I get chronic fatigue. I was diagnosed with fimbromyalgia. I took a zumba class and I thought my muscles in my body was tearing apart. I know how you feel, I hate it.

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Jane, Community Member
1/12/11 12:04am

   I do too. I have the severe muscle pain, stiffness, horrible fatigue and all my joints are popping constantly. I was just fine and dandy a few months ago. Riding my bike and gardening this past summer and taking care of alot of pets.  The doctors do not have a clue what it is. So I am spending money I don't have trying to find out. I have a question for you. Did you just prior to the symptoms happen to have the H1N1 flu shot.  I did. 

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Kev, Community Member
1/14/11 5:32pm

Just wanted to say I too have had an episode of acute to moderate body pain, but this episode had sent me to bed. I had pains in all joints and nearly all of my upper body muscles, I fell into a deep sleep on top of my bed. When I woke up I felt zapped of my energy, and felt some what well the feeling was bad. Oh yeah I was a fit 47 year old big well built muscular hairy big guy, but now I feel as though I do not want to do much of anything. Getting up for work is now a major up hill task, and the 20 minute walk to my local metro sation is literally and up hill struggle. (I leave my home 5.15am for the 1st metro at 5.46am) Today blood has been taken from me to test for the various arthritis compaints, but I dont hold out much hope of that diagnosis. The doctor thought I was coming down with flu, how wrong he was as I didnt have a snifle or cough or sore throat. Ibuprofen and paracetamol only takes the edge off the pain, I do suffer from noticeable aches and pains that are with me 24 7. Being on the front line of customer service mind over matter has to come in, I have to smile be polite and point and direct people where they need to be. I have actually nodded off at work due to sleep depravation, but at the end of my day the fatigue in me is bad. Cold wet and damp weather makes the pain worse, I have make sure I wrap up well. I am sure I have fybromialgia, I mean how bad does body pains have to be for anything else

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Bird, Community Member
1/23/11 12:58pm

melissa,

I am 59 and have pretty much identical paint,stiffness etc. Also pretty much no appetite. My life has gone from hiking, gardening and being active to barely moving. None of the doctors I have been to seen to have any idea what it is. Have you found out anything about your own issues that might help me. Thanks, Bird

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Caren, Community Member
2/12/11 9:57am

 

I had same symptoms-- muscle pain and tightness (not joint).. almost like repetitive strain injury --but all over!! mine was more in upper body, but some tightness in LEs as well. It got worse while sleeping, and I couldn't maintain a hold on anything.When i got up in the morning, I could bend to 90 degrees only.. i used to be able to put hands flat on floor..i went to specialists..some noted muscle tightness (decreased ROM of neck, back, etc) but no cause. My symptoms are almost gone now..after finding a GOOD physical therapist- who did mostly manual (hands on, not estim or US)- she was able to ID tightness, made me feel sane.. she did LOTS of trigger point, hands on, and dry needling. This mess started last march. i didn't get to her until late sept, but by dec. i was soooo much better. I have stretches and ther ex i do at home, but most of that is maintaining.. she was a miracle worker. the trick is to find a PT who does MANUAL. ( the trigger points were NOT fibromyalgia points). we settled on a myofascial pain syndrome diagnosis since all else was ruled out...who knows, but its great to be able to function again. Hope this helps someone.

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sem, Community Member
3/ 2/11 10:59am

I wish the doctors could just admit they don't know and stop trying to blame depression for everything.

I had a sudden onset of problems that made me feel old when I was 27. I haven't had all of the muscle pain your talking about, though. When I do, I find it helps me to take calcium. If you have a vitamin D difficiency you can't absorb the calcium properly. This could cause muscle problems. I am hearing that fibromyagia might be related to vitamin D difficiency. You can take up to 2000 iu daily even with a normal level, so I recommend that. Also you should try an alkaline diet with a lot of fruit and veggis. It cant hurt and will improve your overall health. 

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woosy, Community Member
8/10/12 9:11am

I began reading the posts thinking I was in bad shape but, most of the responses are excrutiating just to read. I am a massage therapist that studies reflexology. I have pain in one thigh and my fellow, therapist does the body work on me to relieve these trigger points and it helps with the muscle pain then the pain and stiffness in the left leg only returns. Two things I tried for the pins and needles pain in my legs because last year I wasaa feeling symptoms of restless leg syndrome and I bought some tonic water and started drinking it,and the symptoms disappated, it contains quinine, it worked well. The other thing is I was diagnosed with severe vit. D deficiency and was treated, so now I get in the sun each day! I also had graves disease and had a partial hysterectomy at 47. I just stared iodine therapy don't do it without a doctor's approval! I do because I don't have health insurance or a doctor. Last night however the pain feels as though it is starting in my feet and it that s true with some of you e-mail me and I help you treat it with reflexolgy. The other possible remedy I am going to try is the alkaline water that I am going to drink because it has increased calcium ions and that will also help, it helped rats tested in Japan in the 90's, so I know it might help me! niseygermaine@yahoo.com

 

Kiss

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Lori, Community Member
3/ 8/11 12:15pm

I have unbelievable pain in both arms & legs that is causing me to question everything about the diagnosis of Fibromyalgia. I have had this condition for over 30 years but the last 5 months I have come down with all this pain and it is controling my life. Squeezing, burning, never stopping, keeps me awake at night and conciese of it during the day 24/7. All I think about is pain. Got to figure out how to get a handle on it because for the past few weeks it has got me beat. This is a miserable condition that every doctor tells you to just deal with it and people can't believe you are really in so much pain because you look just fine. I have never been in so much pain in my life . I feel like I am in a virtual nightmare and i can't wake up. It is so scary. Never been so frightened in my life.

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Brenda, Community Member
4/11/11 12:34am

What you have is YEAST I have the same thing and I'm told the same as you fybromyalgia I have had this my whole life I have done a lot of research, look to your infant kneedles when you were a child.. if you just got this Then try this method if it works for you then your free and clear of pain it did from me but you can't fall off wagon or it will set  you back....Start by not eating anthing with acid like tomatoes,Grapfruit,oranges,lemons stay away from all that stuff including speggetti sauce and your breads cut out bread for 3 weeks any carbs cut diwn on all sugar then start back on rye bread ..You then take 1,500 grms of Vitiman B 12  and Vitiman D you can get them with 500 grm but just take tree and take D three times a day

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Prod, Community Member
6/29/11 2:35pm

Reading all the posts is incredible. I have had on and off fatigue for 2 years and joint pain for longer. 3 months ago the fatigue hit hard. I kept up the crazy pace work, kids activities, church obligations, and full time online school with incredible frustration and an exhaustion and feeling of defeat daily. I have seen the allergist, obgyn, pcp, a psychiatrist. The pain, aching , burning head to toe is making me so mad. Is I can tell I have a long way ahead of me. I hope and pray you all have answers and relief from your suffering. It is terrible.

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Tom, Community Member
7/ 1/11 2:38pm

Check to see if you had taken a commonly prescribed antibiotic (fluoroquinolone) prescribed as Avelox, Leviquin, Cipro, or Ciprofloxacin within six months prior to the start of these symptoms. If so, you are experiancing an adverse drug reaction which can cause Fibromyalgia like symptoms. The onset of these symptoms can take weeks or months after cessation of the drug to appear.

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jodi, Community Member
8/18/11 1:04am

Have you researched Lupus?? 

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62610, Community Member
9/ 3/11 4:24am

im suffering all u've mention. but been diagnose of myofascial pain.. ive constantly searching websites to websites about this.. till i found DEVIN STARLANYL.. sometimes people do have it both.. myofascial pain & fibromyalgia.. sometimes only 1.. or u might have vitamin defiency, or other health problems that contributes pain w/those or any of those sickness.. please do check it.. it might help u as much it helps me..

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Mia, Community Member
9/16/11 2:27am

You just described me. Fibro is identifiable, and has been diagnosable for at least 15 years.  Studies do show that there is a chemical reason and it is part of the autoimmune diseases.  It is not a "disease", it is a condition.  You can read and learn and study from scientists online. A very real part of the nervous system. I am on meds for about one year now, and push myself to live a healthier life, excersize

eat right. Life has truely improved.  Also, just fyi, my sister has it, has been diagnosised for about 15 years now.  Find a Dr you trust, but at the same time dont be in denial.  Take care and be strong...you can do this. Thank you for reading through my experience.  Rhuematoid Doctors help, and Arthritis Foundation also can give you plenty of support....look online...learn live and be grateful this is livable!!

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Lennox Williams, Community Member
2/10/12 2:12pm

hi am 54 years old and i have being suffering just same way as all the people i have read about , pain is what i live with the past 10 years it started out slow but for the past 4 years i have being living in hell to put mildley, all type blood test all different types of doctor you name it i have done and no help will someone hear my cry and help me please

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woosy, Community Member
8/10/12 9:19am

Please try some calcium water or alkaline water if you find for more than $3.00 a gallon don't buy it e-mail me niseygermaine@yahoo.com

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Get Tested, Community Member
10/ 2/12 9:35pm

My wife has has these pains and fatique for several years. She is 47. The pain got so bad she went to the ER and they did a MRI and found what they believe is boan cancer. Get tested to rule this out. I want to save everyone from what she is going through.

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lisa2191965, Community Member
11/ 3/11 2:01pm

I have had joint,muscle and tendon pain for a long time now.My joints pop and knees kill me when I try to climb stairs. I also started to have forgetfulness (foggy feeling) some headaches and tired all the time. My Dr said I have a Vitamin D def, the count was 9. I also have a positive ANA. I show no RA, lupus and had a brain MRI for MS, which was negative. I also had a problem 13 years ago, that my body started to kill fertilized eggs, when they tried to inplant? Nobody seems to have a clue? Maybe you should get a complete blood work up, just to compare to others? Maybe there is something new that just has not been recognized?

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Ronnie0266, Community Member
11/ 8/11 5:17pm

Melissa,

 

My doctor diagnosed me with sever anemia and an extremely low ferritin level in my bone marrow. I was weak, tired, couldn't sleep, emotional, my periods were extremely heavy, muscle weakness and pain (with no working out) my skin was dry, headaches, my hair was falling out. They originally thought of lupus, MS and fibromyalgia. But all tests were negative. Then she checked my iron and it was extremely low. She did further testing on the ferritin level in my bone marrow. It was non existant. She put me on prescription iron high dose iron pills. I am feeling almost 100% better after a few months. For some reason my body does not absorb iron, even though I have a diet high in iron. BTW, if I would sit in bed with my legs stretched out in front of me and get up, my feet would hurt terribly. Like my bones were stretching. It all is better now.

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jack, Community Member
11/16/11 3:44am

Melissa,

          i have googled my symptoms so many times, but i tried once more and got your question..  it brought a tear to my eye as it sounded like i had written it.. i am a 35yr male and i notice my aches about 8-9 yrs ago and it has slowly progressed. My last 12 months at work was a real struggle and my quality of life was turning to crap.. every spare minute went to recovery ready for my next day at work.  i have stopped work until i get some answers.. Been through countless blood tests, x-rays, different doctors,and chiro's in the past five years and now a rheumatologist has suggested its Fibromyalgia..

( Does anyone else have the feeling that fibromayalgia is a name for a group of people that doctors cant find answers for, and if they cant find anything there must not be anything wrong)! 

Its really getting me down, my wife doesn't understand/ seem to care what i am going through.. Its tough enough getting out of bed let alone going to work then coming home all cheerful!  She is really getting me down at the moment, i just wish i could make people understand!

 

If you have any success please let us know

 

Jack

 

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Lori, Community Member
11/16/11 11:48am

After many years of suffering and the last full year of the most intense pain I have ever experienced I finally found an answer to help me overcome my pain enough to get back into life and enjoy it again. The pain was real. It was severe a 10 out of a 10 on most days. I could not find a medication to touch the pain. It was the most horrendous period of my life. No work, no social life, no appetite and even watching TV hurt. I could not find a doctor that seemed to help me with my pain. It was try this and come back in 3 weeks and as I stumbled out of the office I could barely remember where the car was parked let alone drive it. BTW..I am a very self reliant individual who never took sick days even when I needed them when I was able to work. Anyway..Here is what I found and to me it was the miracle I was looking for. I began by reading a book called Fibromyalgia & Chronic Fatigue Syndrome 7 proven steps to less pain and more energy Fred Frieberg. It opened my eyes to my pain. Now I believe I have Fibro and have so for at least 20 years but I could never do anything about it other than to try to get enough rest. So here is what I did. I followed the suggestions in the book. I meditated. It was hard to do at first. But once I started to get the hang of it I found that my pain level would actually drop to a 6 or 7 for a short time before it spiked again. So I continued and I started seeing results. I added exercise. It was hell to do but I did not want to spend the rest of my life waiting for the pain to go away. Since I started to see improvement I continued. It was the hardest thing I have ever done. But it lead me to the relief I was looking for AND I was open to new ideas. Although this took a long time (couple of months) and I was not free from pain I was going in the right direction. What I found next is what changed my life. I tried acupuncture. I found a clinic that offered the sessions very reasonable and gave it a try. I could not believe how much relief I got from the first session. Since it is all based on the same idea as meditation I understood how the body could help heal itself. I was advised to come three times a week. Keep a positive attitude. DO not over do anything as I started to feel better and understand that I could move 3 steps ahead and slide 2 steps back on my road to recovery. And sure enough I was doing better and really believed I was conquering it and then one day I would wake up only to be faced with the 9 pain again. But the funny thing was the pain did not last at that level long. Once I returned for my next visit I was able to bring the pain level down again. I flip flopped up & down for about 2 months. But I stuck it out and after 2 months I was actually down to pain levels of 2 - 6. 1 month later I had reached a pain free day and I was elated. The pain returned slightly but I continued 3 x a week intil it actuall disappeared. I continued to meditate, exercise and do acupuncture. I am now pain free. Back to work and loving life again. So much so that I can't believe how good I feel. I thank god every day for my health but know I have it all to thank for my acupuncture guy. He saved my life. I continue to go once a week and probably will always go to make sure I take the time to destress and remember what it is like to be pain free. What I did not know about acupuncture is that it is helpful for so many things. All you have to do is explain your health problems and let them take care of you. But you have to believe it will work and give it the time to condition your body back to health. I have seen it work wonders on others in the practice I go to. I believe and am a walking testiment to how acupuncture saved my life. I hope that this helps anyone reading this. Call around and see if you can find a clinic that can treat inexpensively. Mine only charges $20 a session and the session lasts an hour. Good luck!

Reply
Lori, Community Member
11/17/11 5:42pm

After many years of suffering and the last full year of the most intense pain I have ever experienced I finally found an answer to help me overcome my pain enough to get back into life and enjoy it again. The pain was real. It was severe a 10 out of a 10 on most days. I could not find a medication to touch the pain. It was the most horrendous period of my life. No work, no social life, no appetite and even watching TV hurt. I could not find a doctor that seemed to help me with my pain. It was try this and come back in 3 weeks and as I stumbled out of the office I could barely remember where the car was parked let alone drive it. BTW..I am a very self reliant individual who never took sick days even when I needed them when I was able to work. Anyway..Here is what I found and to me it was the miracle I was looking for. I began by reading a book called Fibromyalgia & Chronic Fatigue Syndrome 7 proven steps to less pain and more energy Fred Frieberg. It opened my eyes to my pain. Now I believe I have Fibro and have so for at least 20 years but I could never do anything about it other than to try to get enough rest. So here is what I did. I followed the suggestions in the book. I meditated. It was hard to do at first. But once I started to get the hang of it I found that my pain level would actually drop to a 6 or 7 for a short time before it spiked again. So I continued and I started seeing results. I added exercise. It was hell to do but I did not want to spend the rest of my life waiting for the pain to go away. Since I started to see improvement I continued. It was the hardest thing I have ever done. But it lead me to the relief I was looking for AND I was open to new ideas. Although this took a long time (couple of months) and I was not free from pain I was going in the right direction. What I found next is what changed my life. I tried acupuncture. I found a clinic that offered the sessions very reasonable and gave it a try. I could not believe how much relief I got from the first session. Since it is all based on the same idea as meditation I understood how the body could help heal itself. I was advised to come three times a week. Keep a positive attitude. DO not over do anything as I started to feel better and understand that I could move 3 steps ahead and slide 2 steps back on my road to recovery. And sure enough I was doing better and really believed I was conquering it and then one day I would wake up only to be faced with the 9 pain again. But the funny thing was the pain did not last at that level long. Once I returned for my next visit I was able to bring the pain level down again. I flip flopped up & down for about 2 months. But I stuck it out and after 2 months I was actually down to pain levels of 2 - 6. 1 month later I had reached a pain free day and I was elated. The pain returned slightly but I continued 3 x a week intil it actuall disappeared. I continued to meditate, exercise and do acupuncture. I am now pain free. Back to work and loving life again. So much so that I can't believe how good I feel. I thank god every day for my health but know I have it all to thank for my acupuncture guy. He saved my life. I continue to go once a week and probably will always go to make sure I take the time to destress and remember what it is like to be pain free. What I did not know about acupuncture is that it is helpful for so many things. All you have to do is explain your health problems and let them take care of you. But you have to believe it will work and give it the time to condition your body back to health. I have seen it work wonders on others in the practice I go to. I believe and am a walking testiment to how acupuncture saved my life. I hope that this helps anyone reading this. Call around and see if you can find a clinic that can treat inexpensively. Mine only charges $20 a session and the session lasts an hour. Good luck!

Reply
John Hopkins, Community Member
11/16/11 4:00pm

 

Had allot of joint stiffness which I think was due to early Arthritis. A friend recommended Intra, which has really helped. I can now go for long walks and can move about freely and have allot more energy. www.justintra.net/tim/testimonials.php

Reply
darkelfv, Community Member
11/25/11 12:41am

32 here, alot of my symptoms similar to what most here are describing are also on the Lupus symptom list, Im not saying its lupus but that is another possibility most seem to leave out. they say it mostly affects people 10-50 versus most arthritis is over 45. 

 

Although my joint pain is present most of the time, it flares in the winter like no other. I slept through last winter. 

 

this winter, vitamins magneeseum and vitamin E have been helping alot, still get flares on the days before weather changes (thinking presure changes) but mag helps me relax and sleep and e seems to help null the joint pain a bit. 

 

Hope you all figure it out, remember everyone is different so if something doesn't feel right or doesn't work try something else. 

 

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Daisy, Community Member
11/26/11 12:52am

I am 33 and amazed to see so many people suffering with a ton of the same issues that I have. I am a mother or 5. I have a medical education that I can not use because of my health. I find myself very weak at times. Not a lack of ambition but an actual lack of physically being able to move. I had so many drs telling me that I was depressed so I had a forensic psycologist test me for everything. I have been diagnosed with anxiety but he feels like it is due to the pain and no clear understanding of what is happening to me. Anxiety meds make me feel like I am not all there and not clear headed so I rarely take my meds because my mind is nearly the only good thing I have left.... Most times. My problems all started with the basic fatigue... almost like being sick all of the time, but no real illness. So I pushed harder too more vitimin C and B and pushed on. I was going through a divorce, putting myself through school and working so I figured it was normal to feel "Wore out". Then the pain in my back started. I took advil. I rarely took meds so this was a huge deal for me. I don't do drugs or drink, nor have I ever. After about 2 -4 weeks of extreme pain, it got so bad that I couldn't walk. So I went to the hospital then was refered to a neuro surgeon. I was diagnosed with early degenerative disc disease almost immediately. My L4 & L5 are nearly completely gone, I had a buldging disc and an anual tear. Guess that was enough for my legs to not want to work. I was put on pain meds, given shots in my spine, and told that I have to have back surgery but they wanted to wait until I just can't take it any more because I was so young. I was 27 at the time. Its a degenerative disease so the sooner I have surgeries the more I will have to have later :( CRAP! THen I found out that the shots can cause EDDD, so I quit getting those not to mention they really didn't help. I had a cryo procedure done on one of my nerves in my back and while I was, of course, the rare case with the slow dying nerve... it hurt BADLY for a month then it dyed and is a little better. Next, I had a pelvic prolapse.... I had to have it tacked and my bladder too at 28. The idiots suspended my guts to the degenerative part of my back, the ligiment snapped on side of my guts dropped and landed on my intestines. They were already slightly prolapsed even after 2 surgeries, and got worse with the pressure of my other organs laying on it. SO 6 weeks later I had a foot and a half of my intestines removed because they came out of my body. Lucky me... lol I am too scared to go back yet and have my pelvic cavity tacked back up, because they may very well accidentally kill me and my babies need me. Then I started experiencing wide spread pain. Like most of you I have been diagnosed with Fibro too. I think its bull shit. You can argue a dr down, but they are so over whelmed that they dont go out of their way to find out whats really wrong. I have chronic persisitant asthma and was diagnosed with lung cancer.... they were wrong there too. I have calcified cysts in my lungs not cancer. Then they diagnosed me with Multiple Sclerosis, and said that I have other sypmtoms that are not typical of MS. Then my nerologist said she doesn't see the MS the Neuro Surgeon sees... I mean it is a never ending cycle of nothingness. Meanwhile I am in pain and I dont feel like I am living to my full potential. Now all of my joints hurt. I can't sit in one spot more that 5-10 minutes at a time with out my bones locking up... Not normal ligament pops... These are grinding sounds and painful. To stay in constant motion is so tiring. To sleep is painful and I have bruised my ribs sleeping? Who does that!? If I dont get up and move at night the pain is excrutiating. The drs say that my insides are that of a 65 year old woman and that was at 28 I am not willing to see how old they think I am inside now. I have refused my back surgery to have the dead peoples bones screwed into my back until I just cant walk period, or until they find out what the problem really is.

 

I find it hard to believe that one person can be diagnosed with so many issues and there not be one thing that is causeing it all. There has to be a treatment. We just have to find out what the hell we have wrong with us to get the treatment we need. My body is KILLING itself. I really do think that. I fight it with every fiber in body and encourage all of you to do the same until we get answers. My insurance has lapsed now and I cant afford more insurance and all of my little diagnosis arent enough to get disability, even if I wanted to apply for it. My most recent issue is severe headaches that act like strokes. The dr said that they are not strokes even though I cant move certain parts of my body on one side or speak at times. Its rediculous and I feel so retarded. I was a very bright person with a huge vocabulary, and spunk... Now its all in my head because my damn body is on strike. SO frusterating. The headaches are called complicated migraine disorder. You dont say?! Really doc! Does it have to be complicated! I used to never have any head aches.

 

So now my diagnosises read:

 

Chronic Persistant Asthma

Early Degenerative Disc Disease

Severly low Vitimin D

Multiple Sclerosis ?? (I am still sketchy with the drs on that crap)

Fibromyalgia

ADD (By the way the ADD meds do help with what they call Fibro fog ?? I call it not being able to sleep)

Arthritis (but not rheumatoid)

Stigmitism

Pelvic Nerve damage

Hemroids ( no girls diagnosis is every just peechy til you have that! lol)

IBS ( I think thats because they have no idea why my guts keep prolapsing)

Partial Hystorectomy

Endometriosis (because the dumbasses couldnt just take the whole thing. I was 24 when I had to have my hyso due to prolapse)

Now I have some kinda weird unidentified rash.... YAY! :/

 

 

There are theories with my neurologist that I have Lupis... but the blood work does not show that yet.... Too easy.

 

I mean really!? I refuse to believe that I have all of these things wrong with me. There has to be one thing that is causing all of the symptoms that are used to diagnose the above illnesses. I really think that we have something rare they just haven't diagnosed yet. I do have muscle pain but most of my pain is bone pain. There is a difference.

 

Maybe I will start a forum and have people list just their symptoms and what they are diagnosed with and see what things we have in common then take that crap to a University to have them study us. I look normal on the outside. In fact, I look younger than the 33 years that I have lived... I am so tired of drs looking at me and talking to me like I am crazy. They are going to drive me to a depression if I dont get answers and relief soon. I will say a prayer for all of you.

 

I am a very sarcasitic person, hope ya'll dont mistake my little comments as depressed.... lol dispite all that is wrong with my I think I do pretty good to lift my head and smile often.

 

If one of you have any answers please feel free to email me. I would appreciate any theories at all that might get me closer to what ever is wrong with me. Its not in my head... I just know it isnt. daisiesNdenim@gmail.com

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Worried Wife, Community Member
1/26/12 7:25pm

Daisy,

Please go to lymediseaseassociation.org.  Also, check out sunridgemedical.com/lymedisease and http://lymeproject.com

I hope you find some answers.

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Debbie, Community Member
7/16/13 12:42am

Hi Daisy,are You still on this site?I would like to respond to Your condition but last posting I see from You is over a year old,let me know if Your still here.

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Mona, Community Member
11/30/11 3:49pm

Please look into a disorder called Polymyalgia Rheumatica. I had 2 months of horrible pain and couldn't perform daily activities. At my wits end and no relief with a rheumatologist (who did blood work and made no follow-up appt), I went to my general practitioner who is very persistent.  He noticed my symptoms were those of this disorder, even though the average age of onset is 70 (I'm 49 and active).  After reviewing the blood work, high WBC and high C-reactive protein, he put me on 20mg/day of prednisone and I have my old self back!! Taking it once a day is not working, so on this 3rd day I am switching to 10mg in the morning and 10mg with dinner.  Getting a treatable diagnosis has meant SO much and the way I feel is the biggest relief.  Good Luck!

Mona

 

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Jason, Community Member
11/30/11 11:15pm

My symptoms started with bad abdominal pain and slight consipation. I noticed at the same time time started to get a slight pain in my right thigh.

I have had a colonosopy and found nothing.

I am now having muscle pain in my legs and sometimes in my arms not all the time though. I am overwelmed with anxiety.I noticed recently my joints are popping when i stretch. My digestion is slow as well

Ive taken to googling 24/7 which is probably the worst I can do.

I am no so worred I have Muscular Dystophy I ca'y even think straight.

Has anyone else had these sypmtoms

Jason

 

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Jason, Community Member
11/30/11 11:15pm

My symptoms started with bad abdominal pain and slight consipation. I noticed at the same time time started to get a slight pain in my right thigh.

I have had a colonosopy and found nothing.

I am now having muscle pain in my legs and sometimes in my arms not all the time though. I am overwelmed with anxiety.I noticed recently my joints are popping when i stretch. My digestion is slow as well

Ive taken to googling 24/7 which is probably the worst I can do.

I am no so worred I have Muscular Dystophy I ca'y even think straight.

Has anyone else had these sypmtoms

Jason

 

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LilyBean, Community Member
12/28/11 2:18pm

Melissa, I feel your pain. I have had pain for years now and I am only 24.

I was in a car accident in 2004 that injuried my collarbone and god knows what else but the doctors at the hospital didnt even take xrays or anything because I told them i didn't feel anything. Probably because I had an adrenaline rush. Afterwards it felt like my shoulder and collarbone were falling out. It healed wrong of course because no one cared to fix it and i was 17 and didnt know better. An orthopedic doc later did take a look at me and said I had degenerative disc disease in my neck and lower back. I cried and he told me that it's normal to happen to people when they get older. Sorry but I'm not old and Id say I felt like 71 not 17.

 

These scars never heal right. I also smashed my tailbone off ice while skiing and that never healed right either. At age 20 I started feeling severe pain all over my body. My joints would throb and I was so tired I could not get out of bed. I would sleep for over 10 hours, wake up and feel like falling asleep again. Felt like something Eating Me Alive!

 

Age 20, 2007. I went to my doctor and she did a blood panel but didnt test for lymes. I looked up syptoms for the disease and thought it was it so I made the lab take extra blood and told the doc I wanted that test. She was unhappy and didnt believe it was necessary.  I was diagnosised with Lymes disease in 2007 and was given 3 weeks of strong antibiotics and was told that would kill it. I don't believe it worked. You could also get reinfected. There is an advanced test to see if you were bit more than once. Three weeks of treated is not enough for this disease. To this day, a 24 year old woman, I still suffer. I have no insurance and can only afford out of pocket an appointment to a paint management specialist who prescribes pain medication. To me this is cheating!

 

I do not want to be told that it is Chronic pain or Fibromyalgia or anything but it really is. I dont believe pain medication is the right treatment.

 

 

Melissa, I skimmed through the responses but didnt see if you found out what is going on. Did you get the Lymes disease test? I think this is a misinterpreted disease that many people are misdiaognosised.

 

I really hope you find relief! I wish I could get insurance so I can fix myself. Im tired of struggling. The pain ruins my mood and makes me depressed. But doctors want to say that my pain is because I am depressed. We are the only ones that can help change ourselves. No one else will do that for us!

 

Good luck and God Bless.

You are not alone in this world

 

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LilyBean, Community Member
12/28/11 2:18pm

Melissa, I feel your pain. I have had pain for years now and I am only 24.

I was in a car accident in 2004 that injuried my collarbone and god knows what else but the doctors at the hospital didnt even take xrays or anything because I told them i didn't feel anything. Probably because I had an adrenaline rush. Afterwards it felt like my shoulder and collarbone were falling out. It healed wrong of course because no one cared to fix it and i was 17 and didnt know better. An orthopedic doc later did take a look at me and said I had degenerative disc disease in my neck and lower back. I cried and he told me that it's normal to happen to people when they get older. Sorry but I'm not old and Id say I felt like 71 not 17.

 

These scars never heal right. I also smashed my tailbone off ice while skiing and that never healed right either. At age 20 I started feeling severe pain all over my body. My joints would throb and I was so tired I could not get out of bed. I would sleep for over 10 hours, wake up and feel like falling asleep again. Felt like something Eating Me Alive!

 

Age 20, 2007. I went to my doctor and she did a blood panel but didnt test for lymes. I looked up syptoms for the disease and thought it was it so I made the lab take extra blood and told the doc I wanted that test. She was unhappy and didnt believe it was necessary.  I was diagnosised with Lymes disease in 2007 and was given 3 weeks of strong antibiotics and was told that would kill it. I don't believe it worked. You could also get reinfected. There is an advanced test to see if you were bit more than once. Three weeks of treated is not enough for this disease. To this day, a 24 year old woman, I still suffer. I have no insurance and can only afford out of pocket an appointment to a paint management specialist who prescribes pain medication. To me this is cheating!

 

I do not want to be told that it is Chronic pain or Fibromyalgia or anything but it really is. I dont believe pain medication is the right treatment.

 

 

Melissa, I skimmed through the responses but didnt see if you found out what is going on. Did you get the Lymes disease test? I think this is a misinterpreted disease that many people are misdiaognosised.

 

I really hope you find relief! I wish I could get insurance so I can fix myself. Im tired of struggling. The pain ruins my mood and makes me depressed. But doctors want to say that my pain is because I am depressed. We are the only ones that can help change ourselves. No one else will do that for us!

 

Good luck and God Bless.

You are not alone in this world

 

Reply
Worried Wife, Community Member
1/ 5/12 10:11am

Have you been to a Doctor of Osteopathy?  They seem to be more open to examining other causes than the pre-determined and currently acceptable (fashionable) diagnosis, e.g. fibromyalgia or chronic fatigue syndrome.  My husband had the same symptoms.  One day, he was strong, active, and healthy, and the next day he was a virtual invalid.  He is currently on strong antibiotics for a systemic strep infection.  He has only been on them 2 days, so we don't know if that's going to work.  I will let you know in a few days if that was the answer. 

Reply
Worried Wife, Community Member
1/13/12 11:46am

After almost 2 weeks of antibiotics the symptoms have not gone away.  In fact, they seem worse than ever.  We are still searching for answers.

Reply
Worried Wife, Community Member
1/26/12 7:30pm

My husband is on a different antibiotic, now, and he's being treated for Lyme Disease.  He is also taking mega-doses of Vitamin C (self medicating) which seems to be helping, too.  He is getting better every day!  I can actually see some progress.  I hope all of you find answers. 

Reply
ecomom, Community Member
1/ 5/12 6:52pm

I'm just wondering if the original poster ever figured out what was wrong. I'm 26 years old and have had symptoms for 3 years but progressively getting worse. One weird thing I have noticed is that when I go thru my phases of severe insomnia (I cannot sleep sometimes until 7am) my symptoms do NOT seem as bad. When I am awake during the day (and I want to be awake during the day) my symptoms are MUCH worse, I am SO tired and have severe aching muscles everywhere in my body. Sometimes it's so bad my muscles twich and shake. I feel like it keeps me from getting anything done. If anyone has any answers or ideas please let me know. Thanks!!

Reply
markoni7, Community Member
1/ 6/12 3:26pm

Hi there i have had the same for many months joints cracking often, muscles pains,stiffness,sometimess dizziness, very weak, was diff to get out of my bed, went to few doctors they could not rule out only the ona ana test was positive jo-1 antibody ++ positive they said looks like body attack my own muscles but no inflammation wbs 11k but they did not know, i have researched a lot online and decided threat myself with 3 different medications it took 2 months to complete but after this all pains gone, i have my health back again,only problem was to get medicines as all on perscription ,i had to go to thailand to buy them,you must understand and listen your body think and try yourself if doctors dont want help you.Mark - mojyahoo-kontakty@yahoo.com

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lisacal, Community Member
1/ 8/12 6:54pm

Why? Why don't you think you have fibro? Even if it is overdiagnosed, that doesn't mean u don't have it. If you've had a bunch of tests that rules everything else out and you have all the symptoms of fibro, which that's exactly what it sounds like, then you have fibro. Maybe you should go to some chatrooms or visit RELIABLE fibro sites and see what they'r saying. Maybe you'll be able to relate to what people r saying.

 

If u think u don't have fibro because you don't believe in it, well, that's just sad and you're going to suffer even more.

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wookie, Community Member
1/22/12 1:44am

Hi Melissa,  I had the same symptoms and have been diagnosed with chronic fatigue.  At my worst I was sleeping on the couch because of my awful joint pain.  What really helped me was an 'elimination diet'.  Elimination diets are used to test for food allergies.  They take about two months to complete but it's worth the trouble.  I found out I was allergic to a protien in dairy, corn and wheat.  This diet wasn't the answer for my tiredness but it really helped my constant joint pain.  Good luck!

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justakid101, Community Member
1/23/12 10:39pm

hi i am 16years and feel like im 60 when i was 14 i hurt my lower back real bad in the gym and ever since then i havent really felt right. every muscle in my body aches and feels weak especially when pressed on and i really mean every muscle in my body my bones feel alot weaker and i cant hold my arm up for to long without it hurting my hips are also very weak if i write or type for to long my hands start to hurt i constantly feel the need to strech my arms out and even my chest muscle is sore i cant live no weights i feel my muscles are deterating every day i been to plenty of doctors and physical therapys my joints sound like the cracking as well and just typing this is bring stiffness nd  pain to my left arm i feel it in my wrist to shoulder please somebody help me out a little i couldnt wrestle and alot of school sports i always wanted to do. Thank you

 

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justakid101, Community Member
1/23/12 10:39pm

hi i am 16years and feel like im 60 when i was 14 i hurt my lower back real bad in the gym and ever since then i havent really felt right. every muscle in my body aches and feels weak especially when pressed on and i really mean every muscle in my body my bones feel alot weaker and i cant hold my arm up for to long without it hurting my hips are also very weak if i write or type for to long my hands start to hurt i constantly feel the need to strech my arms out and even my chest muscle is sore i cant live no weights i feel my muscles are deterating every day i been to plenty of doctors and physical therapys my joints sound like the cracking as well and just typing this is bring stiffness nd  pain to my left arm i feel it in my wrist to shoulder please somebody help me out a little i couldnt wrestle and alot of school sports i always wanted to do. Thank you

 

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Mort, Community Member
1/24/12 5:43am

Osteoarthritis sems to be the modern Doctors get rich quick scheme.  Schmorals nodes for those who've had back MRI's?  Seldom noted as DDD?  Look alittle further!  I'm a male and since 20's had problems.  Carry a tape recorder to your Dr's visits...  See how quick they change their tune...

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Lacey28, Community Member
1/24/12 2:42pm

have you been to a rheumatologist at all? I am your same age and I just found out that I had a positive ANA, the scheduled me an appt to see a rheumatologist, said they are who has to diagnose it with a warning that it could take months or even years to diagnose the problem. also fibromyalgia can be vicious, they might be right. they cant simply take your blood and say this is what you have with a condition like this, all they can do is figure out what you dont have and go from there. I am sorry about your pain, I absolutly understand how you feel:(

 

 

 

 

 

 

 

 

 

 

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justakid101, Community Member
1/24/12 10:27pm

thanks and imgoin to the rheumatologist friday and i dnt excpect them to find it that quick unfourtanantly but idk if i can live like this another year . and whats a ANA

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justakid101, Community Member
1/25/12 7:47am

thanks and imgoin to the rheumatologist friday and i dnt excpect them to find it that quick unfourtanantly but idk if i can live like this another year . and whats a ANA

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justakid101, Community Member
1/25/12 8:17pm

thanks and imgoin to the rheumatologist friday and i dnt excpect them to find it that quick unfourtanantly but idk if i can live like this another year . and whats a ANA

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tloop, Community Member
1/27/12 6:11pm

I hate to say it but it sounds like fibro to me as well. 

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Lymenonade, Community Member
2/11/12 2:08pm

Sounds like you might indeed have Lyme disease. Did you remember getting a painless red rash on your body that developed into a bulleye rash? Lyme disease in the UK is a major problem and the NHS are very reluctant to diagnose and treat this illness. I personally suffered similar problems to you and took a course of Doxycycline but it didn't help. I suggest you try a combination of Samento and Cumanda from Rio Trading in Brighton. Also cahnge diet radically. No Dairy, sugar or gluten. Take supplements Q10, Magnesium, Kelp Plus, Vitamin A, Vitamin D, Vitamin E, eat lots of Quinoa, lean protein, pulses and vegetables. Try saunas, Bio -resonance treatment, Skenar treatments too. Im not cured after 8 years but I can walk up big hills again. I still ahve muscle and joint issues though. 

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tired, Community Member
2/29/12 1:49pm

i was 34 and got an infection. doc said it went systemic and two rounds of antibiotics killed it. three weeks later, i woke up and it was like my body wouldnt work.  i have edema, muscle pain and weakness, tension headaches, stomach problems, heart palpitations, chest pain, swelling around the muscles that hurt, trouble concentreting, forgetfulness, and no energy.  i was a cna/cma.  i went from lifting very heavy people to walking with a walker in a 16 month period. i fall alot because my legs give out they wont support me anymore. i cant open bottles or lift a glass to my lips single handedly. my head feels like someone put a rubber band around it and my joints pop and crack with the slightest movement.  i cant sleep or wake up because of the pain. most days i cant do anything. its frustraing because i went from a 34 year old super active person to what my husband calls an invalid. im in constant pain and every week i have a new problem. the docs have ran several tests like ms, lyme disease, connective tissue test, thyroid, everything comes back ok. the connective tissue panel was ok except the ra was "extremely high" doc said. they diagnosed me with fybromyalgia but treatment medications affect my heart. i feel like my body is deteriating and im in a living hell. i want my life back. i want to feel 36. i understand what you are going through and am so sorry. i wouldnt wish this on my worst enemy. gl and i hope they(docs) can help all of us.

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Emi, Community Member
3/22/12 7:26am

Hi, I wanted to express the same feelings that you are feeling about your body. I am going through this again. About 2 years ago, I had the same symptoms and ended up going a rheumatologist and taking all sorts of meds. Then a weird, but possibly coincidental thing happened. I had 2 root canals done on my teeth and within a week all my symptoms went away. Until recently . . . now the pain is back. It takes a lot of effort at night for me to roll over to my other side when sleeping and it is following by every joint cracking. I also have to mention that I recently went to the dentist and may need 2 more root canals, I have 1 fractured tooth. Again, it will be interesting to see once I get the dental work done if the pain subsides again. I understand everyone's frustration, because most tests claim there is nothing wrong with you, when you know there is.

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Debbie, Community Member
7/16/13 1:36am

would everyone here ,having these symptoms,look at Your fingernails and tell me if You have lines going up and down them.

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looneymccooney, Community Member
3/10/12 10:36pm

Hi all.  I was perusing the net for help AGAIN.  I am currently seeing a Lupus Specialist at the Rheumatology clinic at Johns Hopkins in Maryland.  My doctor diagnosed me with Raynaud's Phenomenon and Fibromyalgia.  I was also told by the same doctor that I was "developing" Lupus and RA.  No ANA's have shown up in bloodwork, nor have an Rh factors.  We test every 3-6 months.  My symptoms and cat scans and MRI's indicate severe deterioration of joints in my hands/wrists, feet/ankles and knees.  I also have back issues relating to discs.  Here's the deal.  The pain is unbearable.  I cry when I mention it so I don't.  The stiffness isn't for just a couple of hours when I get up in the morning.  It's all day, night.  Even at rest.  There is no peace, no relief.  I know why people drink or take drugs.  I know why people jump off bridges. It's that bad.  My doctor belittles the struggle.  I'm done with it.  I told her it's MY body, I live in it, I deal with it all day every day, and I ought to damn well know how it feels.  I am on Plaquenil, Cymbalta, Provigil and Methotrexate.  Without insurance, I want to tell you that it cost me $1400 to fill just the Provigil and Cymbalta.  The Provigil doesn't work by the way for fatigue.  Not for me.  It's prescribed for alertness and given primarily to fighter pilots to keep them awake and alert.  What a joke.  And the Cymbalta is doing nothing for the pain after being on it for 3 months, and not a thing for depression.  It's hard to feel happy when your doctor looks at you like you're crazy when you're trying to explain about the pain.  The Methotrexate makes me feel like I'm dying every time I inject it.  Nasty stuff.  I just wanted to voice what I deal with, let all of you know that we're in this together.  I'm hoping for the best for all of you, and I hope you all get the help you need.  Please pray for me, that I'll get what I need as well.  So glad I found this site. 

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Worried Wife, Community Member
3/19/12 2:37pm

My 30-year old daughter swears by mega doses of vitamin C.  He has an auto-immune disease which manifests as ankylosing-spondylitis and iritis.  She also suffers from migrain headaches.  She has some very bad days, and stress is something that will trigger a response very quickly.  She recently changed her diet.  She quit all sweets, except honey.  She refuses to use processed meat and/or pork.  She makes her own bread and uses flax and wheat.  She also started taking mega-mega doses of vitamin C.  She has lost weight.  She doesn't limp any more, her eye has cleared up, and her headaches are now rare.  While such a change would probably not "fix" you, it might make you feel a little better.  I wish you well and hope you find an answer.  It never ceases to amaze me that in such a great country one can still suffer from such pain with so little hope of a cure.

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Looneymccooney, Community Member
3/19/12 4:57pm
Thank u! I've made major changes in my diet. Soy protein, eat more fish and sticking with organic foods in addition to gluten free breads and such. Not a cure all by any means but digestion is much better, less swelling, less headaches tho still persistent just not as often. And loads of humor. :). People such as those found on sites like this are a great source of positive reinforcement and support. I'm grateful tho I feel bad that there is so much suffering. I wish we could all have improvements. Stay the course I say and don't give up. Thank u again for the input and advice and for sharing. U just made my day. :) I wish you and your daughter all the best. Stay strong! :) Reply
Joceslyn, Community Member
3/16/12 6:32am
Hi Mellisa Why not try to supplement yourself with vitamins? Vit B,C, E and Calcium is good for this kind of symptoms, trust me I have gone thru this before. Medication won't stop your problem and may get it worse, that's why I don't trust doctors. Exercise is the best antidote but since you are suffering pain at the moment, you have to do it later. Instead go for a full body massage, twice weekly until you can fully utilize your limbs, them make exercise your daily regime. The vitamins take it for long term because it will prevent your muscle and veins from shrinking when you aged Reply
Joceslyn, Community Member
3/16/12 6:49am
Hi mellisa, Have your problem improve since you posted this in 2008? If not, you may like to try supplement. Find a good brand in your country and take it everyday ( better 3 times a day before meals) supplement on vit B, C,E and calcium. Get a full body massage twice weekly because it will help in blood circulation until you can fully utilize your limbs , then you can do some exercise on your own. Make exercise and supplement your daily regime and you won't have this kind of problems anymore. I am more than 40 years old and I keep to my daily routine of exercise and supplement and so far I am in good shape then I was before. Remember the vitamins will prevent your muscle and veins from shrinking because of old age. Good luck :D Reply
mark, Community Member
3/27/12 4:16pm

check out sarcoidosis

 

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king1999@sbcglobal.n, Community Member
3/30/12 7:33am

I dont really have a answer for you I am 54 years old and I am going thoug what you are. Lately I pain has been so bad I had my doctor  take me off work all my blood tests come back normal, but lately i have had swelling on my knees and exteme leg pain I have seen several doctors received several different diagnosis fibromlgia being one lately becasue of my knee pain and the doctor actually seeing it a I was diaignosed with bursitis also pirformis syndrome nerve pain in my back raynauds syndrome for my hands they get cold and turn blue and I still work because the doctors dismiss my pain as being a minor issue. I guess all I wanted to say I can really relate to you I thing their is blood test they can do I even asked my doctor about it and she said they dont because it not required by kaiser.

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melissa, Community Member
3/31/12 10:31pm

I really feel for you at your age. I'm going through a similar thing, have been for the last couple of months for no apparent reason. Even though I'm 66 I've always been very active. After several blood tests nothing has shown up, My doctor can't figure it out, neither can I .Things I've had in the past have reared up, since this began, things like sciatica and carpal tunnel syndrome [which was fixed] have flared up worse than ever. Some mornings are worse than others and sometimes ease off as the day progresses. I certainly know what you mean by "hard to get out of bed"  and being eaten alive! It's driving me crazy, tired and depressed.

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Erin, Community Member
4/ 1/12 10:12pm

You wrote this 4 years ago. After four years do you think you have fibromyalgia? Many times I have gone to anti-aging and alternative medicine doctors. They believe fibromyalgia is actually caused by candida albicans and low thyroid. The T-4 thyroid test most doctors give may show your thyroid is normal, but you need to have a alternative doctor give you a full thyroid test. Sometimes only symptoms can tell if the thyroid is low. And if you have this you probably have a condition known as candidiasis. It can happen suddenly as the immune system is impaired somehow. Please look up ACAM on Google. It stands for American College for Advancement in Medicine. Find a doctor in your area who is an MD and tell them what you have posted here. I cant say why I have posted you four years late, but maybe it is because you have waited so long without hope God has heard your prayers.

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Erin, Community Member
4/ 1/12 10:13pm

You wrote this 4 years ago. After four years do you think you have fibromyalgia? Many times I have gone to anti-aging and alternative medicine doctors. They believe fibromyalgia is actually caused by candida albicans and low thyroid. The T-4 thyroid test most doctors give may show your thyroid is normal, but you need to have a alternative doctor give you a full thyroid test. Sometimes only symptoms can tell if the thyroid is low. And if you have this you probably have a condition known as candidiasis. It can happen suddenly as the immune system is impaired somehow. Please look up ACAM on Google. It stands for American College for Advancement in Medicine. Find a doctor in your area who is an MD and tell them what you have posted here. I cant say why I have posted you four years late, but maybe it is because you have waited so long without hope God has heard your prayers.

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Janie, Community Member
4/12/12 11:50am
I was having the same issues for the past year and a half, they could find nothing wrong! It was SO frustrating! The only time I felt normal was when I was completely still. It hurt SO much to move. They diagnosed me with fibromyalgia and gave narcotics ( I hate taking drugs). 6 weeks ago a friend of mine told me about this 'super juice' (I'm not a fan of the latest fad either!). I was in so much pain I was willing to try anything! 1 oz equals 5 servings of fruits and veggies. It has been developed from a region where the people standardly live to be 100 years old. It is all natural and 2 ounces a day gave me my life back! I'm not joking! It of course is a multi level marketing product(SO NOT A FAN OF THOSE EITHER) but I swear to you I will NEVER live without it. You can buy it from anyone you would like to, I am nt into marketing but if you want to try it or find. Out about it you can go directly to the site where I buy it and read up on it or click the 'buy now' button. I am completely serious about this and I am NOT in this to make money. I am well known in my community and ABSOLUTELY DON'T NEED TO SELL THIS FOR PROFIT. I WISH I COULD GIVE IT AWAY TO EVERYONE THAT HAS CHRONIC MUSCLE PAIN AND JOINT PAIN AND STIFFNESS!!!!! It has cured me!! Www.janiekincaid.viaviente.com (google via Vicente to find out about it) PLEASE dont pass up this chance to be pain free!!!! Reply
Shan, Community Member
4/14/12 5:56pm

I have the same symptoms and I felt the same when when it started 14 years ago. I was diagnosed with Fibromyalgia. When I do anything physical such has picking up a bag of grocery my body takes its revenge on me several hours later I feel like I was severely battered. I am then hit with a wave of chronic fatigue, not able to get out of bed for several days. My body stiffens up if I stay in one position for too long. I do feel like I'm 150 years old. My grandmother which is 100 does not have the pains and stiffness I have at 40. 

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myyonny, Community Member
4/15/12 12:32pm

My mom was having the exact same symptoms and we have now narrowed it down to a wheat allergy.  Immediately stop eating any products that contain wheat and gluten and see what happens.  Hopefully it will work for you as it did my mother.  In less then 24 hours she could go up and down the stairs without crutches.  I do think it will take some time before she is 100% better but she is much older.  Some people develop this allergy over time and become very sensitive to it.  You may also be allergic to soy and dairy products.  Do some research because people have this more and more now.

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Stephanie, Community Member
4/19/12 9:28pm

I am 28yrs. old as well & I have some of the same things that you are describing. I have never had anything remotely like this before in my life. I have serve muscle pain that sometimes will last for days on end nothing I can do to get relief. I can go a week with no pain or i can have pain for weeks on end that seems to move place to place. I had incredible pain in hand I could not move it, jar or put pressure on it with out screaming. I have had it in my knee & the only way I know how to describe it is like the muscles where ripping away from my knee. I have experienced pain in just about every part of my body at one time or another. After the pain as gone away I have experienced popping & a crackling sound. It is also tender to the touch. I had my arms to feel like sometimes that they were coming out of place. The muscles wasn't hurting or anything, like said it just felt like coming out of place. I had blood test after test checking different things including limes disease, vitamin levels etc.. all that came out great. All this didn't start til I was treated with mega doses of antibiotics for the something that I didn't have. First they said it was MRSA then it was cellulitis & then to they don't know. In actuality it was a spider bite promptly treated healed quickly with a nice scare in it's place. I believe that all  antibiotic is the cause simply from all the research have done of them. However I can not get the doctors to confirm any of this even though they have been cases reported by people. Who is experiencing very similar to what i am experiencing now after taking these antibiotics. However if they are another cause for this I really wish that would find it & treat it or at least confirm it's from the antibiotics. It is very depressing living with this & having no answers for it. 

 It's hell trying to do things that I use to do but find very painful & difficult to now.

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Zayne, Community Member
6/ 7/12 3:32pm

I am 48 and 3 weeks ago the same symptoms hit me, that night I ended up in the ER due to the pain being so bad. My PCP has done numerous tests and everything is fine. Has anyone received an answer of what this could possibly be from their doctor? I am a very active person in the K-9 Search & Rescue area & this has really made it hard to work my dogs.

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aaron, Community Member
4/26/12 6:21pm

melissa did u ever end up finding out what ur problems was? cause i feel the same way.

 

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shirley g seydel, Community Member
4/28/12 2:24am

sounds like Sjogrens Syndrome.  I've had it for about 5 years.   

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lauramarduke07, Community Member
5/25/12 3:47am

Have you checked to see if you ever took an antibiotic by the name cipro, avelox, levaquin or any other type of fluorquinolone? those have been known to cause severe and debilitating side effects. The reaction is called being floxed go to facebook and type in Fluoroquinolone Antibiotic Toxicity (Cipro, Levaquin, Avelox, Floxin) it will give you a wealth of information about this and it is also a support group for those who have taken it, this is serious stuff they use these types of antibiotics to treat anthrax some people have been severly debilitated with just one pill!! not even exagerating its life altering pill worst thing that has ever happened to me made me unable to walk, joint pain all over, tremors, insomnia, anxiety attacks, peripheral neuropathy like electrical shocks, tinggling and the list goes on I am only 28years old and was perfectly healthy before this! good news is I have gotten better with changing my diet to candida diet, juicing lots of greens, stopped all medications and tried to detox my system. Only eat organic nonantibiotic no hormone grass fed meat because the regular meat is riddled with hormones and dosed with antibiotics also that contain fluoroquinolones which causes to be refloxed. Drink lots of lemon water to help with nerve pain and to detox liver, probiotics for stomache issues and digestive enzymes. Take lots of vitamin D, magnesium especially because fq's deplete that mineral in you, and calcium. Also I don't eat anything processed or with perservatives all natural, changed shampoo, soap and toothpaste because of the harsh chemicals and containing fluoride in them. I owe this all thanks to people on this site they helped me understand this so much great source of information for this toxicity! good luck to everyone you can get better! 

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lauramarduke07, Community Member
5/25/12 3:58am

also heres a copy of the flox report explains alot more about it too and check out dr. terry whals on youtube or facebook, she had MS and cured herself naturally with food only!!  ----> http://www.myquinstory.info/wp-content/uploads/2010/01/FLOX_REPORT_REV_11.pdf

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kg15, Community Member
6/10/12 1:35pm

Jack,

I feel the exact same way! I have headaches, joint and muscle pain, popping joints, extremely tired, and i itch constantly.  This all started one day in 2009 after i passed out. I am an 18 year old female and have been told i have fibromyalgia and i think that it is just a term to use when doctors don't have any other answer!! i have had so many blood tests and everything comes back normal.  I hate complaining because have way worse problems than i do, but I also hate being in pain everyday.  I never hang out with my friends anymore because i am so tired.  And i'm also tired of doctors basically laughing in my face because they think its all in my head! ... i did have a bad bug bite probably 5 years ago, i don't know if that would be related?

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silverbaglady, Community Member
6/17/12 12:39pm

I am not an MD just another person suffering as you are. I have been diagnosed with Fibromyalgia after having had Lyme Disease. It does tend to happen when the body is stressed out with some major event or illness. I have done a lot of research on line, it is the only way to get diagnosed. The chances are that you will never get rid of this problem, but there are things that can help. I have narrowed mine down to Lupus, still have Lyme or it is just Fibromyalgia or Fibro plus something else. A lot of auto immune diseases don't test that accurately. I go to a pain center and they have given me Gabapentin wich has helped the nerve pain quite a bit. Since I also have problems with my spine and arthritis, I have had shots that help the inflammation. Do you live in an area where there is Lyme disease, or did you travel somewhere where you could have been bitten by a tick? You need to keep looking on line until you find a match. In the mean time you will probably need your symptoms treated. I have found the pain center much better at helping with pain that any single doctor. Do you have one near you?

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gurlymonster, Community Member
6/19/12 11:09am

I have to agree with Lauramarma07 who mentioned basically floride poisoning from antibiotics like Levaquin and Cipro. I was given Cipro for a recurring sinus infection several years ago and shortly after my symptoms of fatique and pain began. Was feeling semi-ok three weeks ago, when I contracted walking pnemonia and was given Levaqun. The lung congestion cleared but now I'm dealing with pain in all my joints and muscles. Anyone who has been diagnosed with fibromyalsia should look into their pharmacy records to see if they've ever taken these toxic medications. Good Luck to all.

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sandy barker, Community Member
6/21/12 6:04pm

I can't tell you what it is, but take some glucosamine/chonjointrin(?) with MSN and you will feel better.  You will have to keep taking it.  A good brand name is Move Free.  They have some kinds that will help faster.  Normally it take 2 weeks to feel better, with the new stuff about 3 -5 days.  Your cusions in your bones that act as shock absorbers are wearing out .  This medicine will help it grow back and you will not feel the pain of bone on bone when you move.  The MSN helps the spongy tissue to grow back healthy.

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sandy barker, Community Member
6/21/12 6:11pm

You need some glucosamine and chonjointrin (?) with MSN.  The tissue that acts as shock aborbers to your joints are getting thinner.  Glucosamine will help it grow back spongey again and the MSN will help it to grow healthy.  A good brand is Move Free, for maintenance but they have others that will help you feel relief in 3 to 5 days.  It is sold over the counter.  A steady regiment will help you. I don't know what it is called, but the Move Free helps in about 2 weeks if you don't get the fast acting stuff. 

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sandy barker, Community Member
6/21/12 6:11pm

You need some glucosamine and chonjointrin (?) with MSN.  The tissue that acts as shock aborbers to your joints are getting thinner.  Glucosamine will help it grow back spongey again and the MSN will help it to grow healthy.  A good brand is Move Free, for maintenance but they have others that will help you feel relief in 3 to 5 days.  It is sold over the counter.  A steady regiment will help you. I don't know what it is called, but the Move Free helps in about 2 weeks if you don't get the fast acting stuff. 

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Joan, Community Member
7/17/12 2:43pm

Try the treatment for chronic Lyme disease. It has worked miracles for some. See a Lyme disease specialist.

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Daisy, Community Member
7/23/12 10:53pm

Ok. New information. I have been like all of you trying to find out why I was so sick. I am not sure this will help all of you but if it helps just one of you its worth posting. My son Norman is very sick. He suffers a the young age of 9 with aches and pains that we have and his lungs are really bad off. We thought he just had severe asthma. Recently, we found out that he has Mitochondria Myopothy. It causes literally everything that I have wrong with me. Women are the carriers and if the mom has it the children have it. It affects males much worse than females. Stunts growth causes bowl issues ect. The thing is the disease is though to be extremely rare because people that are found with this disease die within the first few weeks of life diagnosed with a failure to thrive. My son did almost die of a failure to thrive and if I hadnt over fed him his whole life he may well have died at 8 weeks old. For some reason God let him stay in my life for the now 9 years that he has been alive. He is more sick than I am. Women can have symptoms ranging from migraines - fibro - joint pain and poping.... and the list goes on. ASthma, thyroid disorders..... Its crazy. You can have normal blood testing and still have this disease because it affects the mitochondria in your body. The mitochondria is the power house that runs your body - without it you would be an invilid or dead. This disease affects every living cell in your body EXCEPT THE BLOOD CELL!!!! That is how you can have normal blood work and be sick as hell. Your doctor can run lactid acid levels from blood work and if that is high it gives cause for further testing. Then you see a genetist and they do a muscle biopsy of your leg to confirm the disease. It is hereditary. Also, WAS thought by doctors here that mothers with it are usually steril and have no kids. I was told at my hystorectomy that I shouldnt have been able to have the first kid... now after our muscle biopseys the drs want to study my little family because I am a sick mother of 4 sick children! They all have a form of seizures, adhd, add, or epilepsy. One has muscle and joint pains and my youngest is the sickest. There is no cure for the disease but they can better manage the pains and symptoms caused by this disease. I hope yall find out what is wrong with you. It took us 8 years to get the right answer..... I think more people have the disease than what they realize. They just dont know enough about it to diagnose more people. A really smart old dr with questionable bedside manor was our key to finding this and I hope the drs can help others live a little better by finding out what ever I am doing to keep my kids well. Good luck to you all.

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Faith, Community Member
8/ 9/12 4:26am
Hello all I am a 36yr old woman that is always in chronic pain!!! I am laying down crying now because I do not know what's wrong with me! I continuously go to the Dr. But my blood test come back normal. I'm embrassed to go to my dr again bacause I think he is starting to feels that the problem is in my head! I am always tired!!! I my conditon is getting worse. It is encouraging to read other post so I know that I am not alone in this struggle. Does anyone having any holistic remedies to help the join pain? Help!! I am sooo sad! Reply
cathy, Community Member
9/28/12 12:11pm

hello faith my name is cathy, I am so sorry to hear that you are experiencing the same thing that I am going through I know you are aware that there are hundreds maybe even thousands of us. but here is some good news. I have deep chronic pain in my thighs in my elbow in my shoulders in one knee in my lower back in my pelvic area between my legs sometimes in my thumbs and wrist and a deep dull ache in my hips at all times. I have been diagnosed with Rhumatoid arthritis. I had to see a specialist in order to recieve the lab results. My RA doc says that not everybody has the RA factor in their blood but hey can still have RA. the onset of the illness has just not gotten that bad Yet. Find you a Rhuematologist in your area and let them run all the test. they will put you on meds that will stop your immune system from attacking your body. I don't want to be hasty in telling you this but please don't wait because the longer you wait the more damage is being done. I still have pain but not as severe. I pray an awaful lot and GOD always helps me make it through the day. I am a firm believer in Jesus and I pray in his name, he always shows me what to do next. the best thing about that relationship is Jesus want tell anyone what you tell him. and remember  your name is FAITH

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cathy, Community Member
9/28/12 12:14pm

hello faith my name is cathy, I am so sorry to hear that you are experiencing the same thing that I am going through I know you are aware that there are hundreds maybe even thousands of us. but here is some good news. I have deep chronic pain in my thighs in my elbow in my shoulders in one knee in my lower back in my pelvic area between my legs sometimes in my thumbs and wrist and a deep dull ache in my hips at all times. I have been diagnosed with Rhumatoid arthritis. I had to see a specialist in order to recieve the lab results. My RA doc says that not everybody has the RA factor in their blood but hey can still have RA. the onset of the illness has just not gotten that bad Yet. Find you a Rhuematologist in your area and let them run all the test. they will put you on meds that will stop your immune system from attacking your body. I don't want to be hasty in telling you this but please don't wait because the longer you wait the more damage is being done. I still have pain but not as severe. I pray an awaful lot and GOD always helps me make it through the day. I am a firm believer in Jesus and I pray in his name, he always shows me what to do next. the best thing about that relationship is Jesus want tell anyone what you tell him. and remember  your name is FAITH

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cneal49, Community Member
8/11/12 4:17pm

I just want to add to this page that I have been having stiff joints, swollen hands and feet along with severe pain and popping in every joint in my body. I am 49 years old over the last several months my pain has gotten to the point where I hate to even get out of the bed. Every morning I sit up and when my feet hit the floor I am so stiff and in so much pain I complain every step I take to the kitchen. After reading all of these posts today. I think that I am going to find me a specialist and have myself checked out. I'm tired of getting shots in my wrist, shoulder and hips. I need to know what is going on with my body. When I say that I am in pain, some of my family just looks at me and rolls their eyes. They look at me like I'm making this up. God I hope I can find someone to help me cause I know that i'm not crazy.

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Debbie, Community Member
8/14/12 11:51pm

I am 55 and have had fibromyalgia for 3 years now. I see this was 08 when you wrote this, it is now 2012. Has anything changed? I feel horrible. Tired all the time with horrible pain. Sometimes death sounds better. I am on Lyrica 150mgs 3xs a  day & cymbalta 60mgs at night right now, but it's not working.

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kim who is fed up, Community Member
8/21/12 1:17pm

hi i also woke up one day feeling like i was beat with a bat every thing hurt on my body my legs hurt so bad they go weak my hands feel like they just dont want to work any more my arms feel like someone has my muscles and there pulling them out of my body. i have been to 5 doctors already 2 of which were in the ER for this problem.. i went from doing everything to feeling  like i was  50 years older then when i went to bed . i have had 19 blood test not including the ones from the ER i have been told could be damaged nerves , could be in my head and then got mad enough went to another doctor and out right told them i am not CRAZY i know what my body feels like i know what i felt like weeks ago and there is something wrong . i still dont know what i have to this day i have been tested for lupus , arthritis , RA , muscle damage ect. my thought is i am so tired of sitting around why the doctors take there time spend my money and send me for more and more tests and i still leave the office going ok its not --- but what is it.. i have now made a gyno. appt and i am going to see if it has to do with hormones and then i am also going to have a gastroentoligist give me tests on my stomach ect to see if there is any inferction there so you may want to consider these options to because your reg. family doctor isnt looking into anything that has to do with the belly area unless you have pain there ...if you get any information on whats causing this in you please let me  know i will do the same maybe the signs and symptoms are the same... good luck and feel better.Sealed

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kim who is fed up, Community Member
8/21/12 1:17pm

hi i also woke up one day feeling like i was beat with a bat every thing hurt on my body my legs hurt so bad they go weak my hands feel like they just dont want to work any more my arms feel like someone has my muscles and there pulling them out of my body. i have been to 5 doctors already 2 of which were in the ER for this problem.. i went from doing everything to feeling  like i was  50 years older then when i went to bed . i have had 19 blood test not including the ones from the ER i have been told could be damaged nerves , could be in my head and then got mad enough went to another doctor and out right told them i am not CRAZY i know what my body feels like i know what i felt like weeks ago and there is something wrong . i still dont know what i have to this day i have been tested for lupus , arthritis , RA , muscle damage ect. my thought is i am so tired of sitting around why the doctors take there time spend my money and send me for more and more tests and i still leave the office going ok its not --- but what is it.. i have now made a gyno. appt and i am going to see if it has to do with hormones and then i am also going to have a gastroentoligist give me tests on my stomach ect to see if there is any inferction there so you may want to consider these options to because your reg. family doctor isnt looking into anything that has to do with the belly area unless you have pain there ...if you get any information on whats causing this in you please let me  know i will do the same maybe the signs and symptoms are the same... good luck and feel better.Sealed

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superfit, Community Member
8/22/12 8:43pm

I am no doctor but have an extensive background in nutrition. The very first thing I would do is start juicing fresh organic fruits and veggies and lots of them. I would do this several times a day. Your body is a very smart machine, if you feed it well it will heal itself. What do you have to lose? I juice everyday and am 49 yrs old, look like I am 30 and have not seen a doctor in years! Trust me, it works!

 

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suntan50, Community Member
9/ 9/12 9:50pm

I'm trying to figure out what I've got as well.  I had an inguinal hernia repair in July and thought I was mending just fine.  About 5 weeks later, I was walking a trail in the park with my friend when I slid going down a hill and stoved my lower back.  It didn't get sore like I thought it would, but a few days later I developed piriformis syndrome.  As I was working thru that, I then developed lower back discomfort.  My doctor put me on Naproxen for a week, and it did seem to correct the back problem.  But then I started having extreme muscle pain.  It hits in my legs, but also in my back, across my shoulders, across my chest.  I can barely walk unless I take 2 ibuprofen and wait for it to kick in.  I am a  62 yo female, been healthy and active all my life, walking, lifting weights, doing yoga and tai chi, eating a diet rich in fruits and veggies......I am feeling frustrated.  I keep wondering if my body if reacting to the mesh that was used in my hernia repair.....or is this something totally unrelated.  I plan to see my doctor again this week.  

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Gillian, Community Member
9/17/12 9:08am

Hello Melissa, i see this post of yours was from 4 years ago, i am wanting to know if you found out what was wrong and how you are now as you described exactly my symptons of the last 7 weeks and doctors cannot find out what;s wrong with me too? Regards, Gillian

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cathy, Community Member
9/28/12 7:19am

good morning mellissa, I am so sorry to hear that you have these symptoms at 28 years young. My name is cathe and I am 48. It sounds like you have what I have. I have been diagnosed with RA It is a autoimmune disease that attacks for no apparent reason. I am seeing a ra doc at this moment. My symptoms started exactly like yours. And to top this whole thing off no one else in my family has this thing. I take plaquinil at the moment it helps some. the thing that helps me most is prednisone. It wipes out the imflamation and I can do things again. but the weather plays a major role in how Iam going to feel. before it rains I can tell it is coming. After it rains the pain is not so bad. have you seen an ra doc. their are meds that you can take that are not steroidal. they are just inflamatory. The down side is that you have to eat with all of them or else they make you stomach hurt. So then comes the weight gain, I'd rather be in less pain and be a little heavier than to be in pain and be smaller. Keep looking for you a doc. youre going to need one. This is incurable but it is treatable. feel better girl don't give in to this.

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mohammed, Community Member
9/30/12 4:16pm

Hi am sorry to hear that your suffering from all this. One thing i can recommend you to do is an ancient therapy known as Hijama ( commonly known as wet cupping) its an alternative holistic therapy which is used along the acupuncture points or directly on the site of pain if accessable. combining this with some physio could do wonders

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Rita, Community Member
11/13/12 7:12am

Hi melissa I hope you are ok now, if not I recommend that you stop consuming diarry products especially milk. I would not go into details but sop it and get back to me. I was in worst situation than all that listed above.

 

Good luck

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healthcentrix, Community Member
11/15/12 1:49pm

As awful as it is to hear what you and the others on this page are going thru, it is somewhat reassuring that I don't have some rare disease. I have the fibro dx too with arthritis, stenosis, etc. yet it seems that it is a Medical Incredible disease. I am now afraid to go to the dr as I fear the look on his face when he has to tell me what is REALLY wrong. Eastern says it is my adrenal system, Western says bad muscular/skeletal system and no one has a cure and my life if effected soooo much. Joint replacement...great. I know too many people who have that surgery over and over...may have temp relief and end up limping on pain meds. SOS

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GAmom, Community Member
12/ 7/12 1:27pm

Make the dr. check you for Lymes disease.  My 14 yr old son had the same thing and then he also started getting Staph infections that would come back every couple months.  I finally got the dr. to check him for Lymes and he was positive.  After a heavy dose of antibiotics and keeping him on Monolaurin (a natural defense)  he is feeling 100% again.  

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KL, Community Member
12/10/12 9:15pm

Have your doctor or a naturopath test you for heavy metals in your blood/body such as lead, arsenic etc. My husband has been dealing with muscle and joint pain, difficulty concentrating, brain fog for the past 3 years, and he is only in his early twenties and in good physical shape. We could not figure it out, got a 24 hour urine test done at the naturopaths and found out that his lead levels are insanely high (at the level that most people would be in a coma). This is most likely caused from on the job exposure. On oral chelation therapy (EDTA) now and seems to be improving, however lately he seems to be degressing but I'm sure it has to get worse before it can get better. Chelation therapy uses the chemical to bind to the heavy metal and it is removed from the body through urine. Often it is very difficult to narrow it down to this cause.

 

Also, have your home tested for Radon which is connected to Lead by the way it breaks down, which may be how you are getting your exposure. Radon is a natural gas, but can be deadly in high amounts and in closed spaces, such as a house, it can increase to dangerous levels. You can get a DIY Radon test kit at Home Hardware stores for $15, it takes 4 days and you pay the lab $30 for testing. We are in the process of getting this test done.

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PALLY, Community Member
12/14/12 5:29am

Melissa, by now I would imagine you have an answer as to what is wrong with you, I don't know why you don't believe your doctors when you say they are wrong with the diagnosis of Fibromyalgia.  Believe you me, if you have got it, you would be in considerable pain, stiffness, also suffering from what feels like Brain fatigue and you do feel as though your body is fighting with itself.  I have had this illness since 1995 and I feel as though I also have alzheimers but that is the brain fatigue, you cant think of words, you can say the meaning but not the actual word.  Unfortunately, I now have very bad arthiritis in my shoulder joints and will have to get replacement joints, but I am worried about this as the muscles which lift the arm and virtually non-existant and excerising them only makes the situation worse.

 

I hope you have the explanation for your illness and have got help from your doctor.

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Tara, Community Member
12/21/12 8:23am
You all think your too young.. I'm 18 & can barely work my fast food job or write a paper for school. I need an answer now Reply
Marisa licata, Community Member
1/ 7/13 6:46pm
Get tested for celiac disease, you have to go on a gluten free diet. Reply
Niki, Community Member
1/17/13 8:38am

Some of you mention skin and eye symptoms. Have you have urinary problems as well? In combination with arthritis it could be Reiter Syndrome.

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Sammie77, Community Member
1/24/13 5:18am
Hi everyone, I am a 35 year old mum of 2 children and have been really sick for 8 years now. Been to every specialist imaginable with diagnosis changing constantly from MS to CRPS, Small fiber neuroapathy and now Fabry disease. No doctor seems to have any idea what's wrong now and keeps giving me different medications that do absolutely nothing for me. My symptoms are - Chronic Fatigue, severe weakness in all limbs, daily headaches, insomnia, muscle pain, nerve pain in limbs and severe left sided thoracic nerve and joint pain with chest pain and shortness of breath. For the past year and a half the newer symptoms have been dizziness and nausea with stomach problems and I haven't driven or worked now for a year and a half. It has ruined my life. There seems to be no help out there for me at all and I am now housebound with severe anxiety and depression due to this illness. It feels like something is attacking my nervous system yet nobody can give me answers. I just can't handle the chronic pain anymore. Has anyone taken Lyrica and has it helped with nerve pain? Reply
bridgett, Community Member
1/24/13 8:46am

also, mouth issues.  root canals are one of the major causes of our new diseaseas.

gum disease along with our poor diet

 

HOPE YOU UNCOVER NOT RECOVER! 

 

bridgett

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Brian, Community Member
9/13/13 8:58am

Sammie77, I would assume that Lyrica works for some people otherwise Pfitzer wouldn't have a market for it and be assumably making profits. With that said, make sure you do some of your own research on the drug before trying it. Because Pfitzer states that if you stop taking the drug it will be out of your system in a matter of days (as well as any negative side effects), that is also what the doctors will tell you. However, I took it for two weeks and it seemed to be helping a little. My doctor decided to up the dose from the minimal amount I was taking and within two days I was being taken to the ER by ambulance. I had issues after that for quite a long time which I can only attribut to being lasting bad side effects. My PCP won't exactly agree with that but I found a lot of people on line that had similar situations. So my advice is do your own homework in addition to taking your doctor's advice

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AriGryphon, Community Member
3/31/13 7:43pm

I am only nineteen, and I have the same problems. The doctors are not full of it, it is fibromyalgia. It is a recessive genetic disease, and can manifest at any age. It manifests most commonly from the late twenties to fifties, and is often accompanied by arthritis in older people. I had the misfortune off rare pediat if fibromyalgiq, diagnosed in fourth grade. My mother, who also suffers from fibromyalgia, did not beginto exhibit symptoms until her late twenties, after having three children. There is no cure for fibromyalgia, but there are many ways to alleviate the symptoms. My mother and I see a rheumatologist' who monitors the levels of vitamins and minerals in our blood, and makes sure we take the right supplements. B12 and other B vitamins are especially important, along with magnesium, calcium, and vitamin D. Regular chiropractic care and  massage therapy is extremely beneficial, but it is important to  telll the chiropractor and massage therapist about your fibro, as they will need to be far more gentle with you than with other patients to avoid hurting you. A consistent, moderate amount of exercise makes a vast difference' but it is imperative that you never overexert, as that will make your symptoms far worse for weeks or even months. Even when carefully managed, the pain is often debilitating, and, over time, the effectiveness of pain medication will decrease. Ten years of fibromyalgia has affected my nerves and the pain receptor in my brain so much that I must take vicodin, valium, and ambien just to sleep at night. Tylenol and other over-the-counter medications have no effect whatsoever, and the effect of the heavy prescriptions is minimal. Fibromyalgia is a rheumatological disease related to qrthrits, so you are more likely to develop that as well. Flexeril and Valium can help with pain by relaxing the muscles, but will do nothing for the joint pain. My fibro is accompanied by hyper mobility, which weakens my joints even further, and causes them to crack whenever I move and dislocate on a regular basis. Fibro weakens the entire system, so you will be more susceptible to illness and injury, and you will recover far more slowly from both. When you are sick or injured, it is far easier to 'overdo', so you will need to moderate your activities and pay careful attention to how your body feels. It is very easy, due to the fatigue, to sleep far too much, and fibro is often thought to be mono until bloods test come back. The only treatments for fibro are lifestyle changes, physical therapy, and the right supplements. Be sure to see a doctor, preferably a rheumatologist specializing in  fibromyalgia and arthritis, to monitor your supplements. It is possible to take too many vitamins, and you don't  want vitamin toxicity on top of the fibro. There is  a prescription that came out recently that claims to help with fibro, but individual results vary widely. It does nothing for me or my mother, but has made a great improvement in the condition  of friends  with fibro. I had some success with an herbalist for awhile, but some of the herbs reacted with my prescriptions and landed me in the hospital. Either see an herbalist or a medical doctor, but not both (at least, don't take meds from both). Make sure, if you see an herbalist, that you find a licensed natural doctor with a good reputation. Misuse of herbs can be just as dangerous as the right ones can be helpful. There's more to say about fibro than can be easily summarized, and it takes years of very painful trial and error to find the right balance. Feel free to email me at arigryphon@gmail.com with any questions or just for support band advice. I know how terrible it is to be chronically ill at far too young an age,and how confusing and frustrating it is to spend years  seeing specialists before getting a diagnosis that can't actually be cured, and then few treatments that do help are a nightmare to get covered by any insurance company, if they'll cover them at all. Be prepared to struglle with obesity, as normal amounts of excercise can incapacitate you for weeks. Eating healthy is more important with fibro than most people, because you physically can't exert as much energy as the average person. It's a long, hard road, but you don't really get a choice. You'll need to rely on the love and support of your family to fight it, and be aware of your limitations. It sucks, but the only thing to do is to take care of yourself. Nothing will make a difference overnight, but you can't have any kind of functional life if you don't do just about everything just right. You'll mess up, you'll suffer, but you just have to get back on your feet slowly and steadily. Rushing it makes it worse, and so does resting overmuch.  Like I said, you can feel free to talk to me. Having someone ho understands helps, and you can avoid learning some things the hard way, and get back to actually living a lot faster. I wish you luck with the lifelong battle you face, and I want you to know you've got my prayers. Stay St long, and never hesitate to insist on all the help you need. Fibromyalgia is a truly disabling condition, and the ADA protects you just like anyone else. If you're going to collapse from fatigue while waiting for a table at a restaurant, for example, just let them know you have a disabling condition and must be seated immediately or else have seating provided while you wait. Remember that your muscles are weaker and you tire easily, so ask the grocer to load your group series in your car when you shop, and hesitate to use the automatic buttons on heavy doors. Take care of yourself in small ways every day, and you can avoid getting severely disabled. Don't push yourself any harder than normal when you start feeling better, or you'll relapse worse than ever. Let people help you even when you feel alright, and you've got good chance of ramining alright.

 

God bless and good luck!

 

Ari Stewart

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AriGryphon, Community Member
3/31/13 8:02pm

Please pardon my many typos. Tablets are not ideal for typing.

 

Get documentation from all your doctors and apply for SSI and Medicaid. It takes them forever to make a decision, but if you get SSi, you automatically get Medicaid, which will cover any treatment deemed medically necessary by a doctor and is not covered by your primary insurance. Serious meds for pain and depression are expensive, as are all the specialists. As long as you file the paperwork, they'll also reimburse you for most medical expenses you had to pay for while they were making a decision. When that comes in a lump, if you're not buried in medical bills, you should consider investing in a hot tub or paraffin spa. Those things can help with joint pain immensely if you use them regularly.

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horacethecheese, Community Member
4/29/13 5:20am

hi have you had a nutrient blood test they can test for vitimin deficiencies. i had some ifromyalgia symptoms and read up about it  diet and yoga and avoiding stress helped me a lot as did magnesium supplements to relax the muscles. juicing also helped a lot and massage therapy along with things to destress dn avoid stressful situations. also avoiding a lot of sugar and carbs helped in my case..i was never diagnosed as the symptoms were so general..tiredness stiffness {would wake up with my hands like claws} so you may never know..my symptoms just went away after adjusting diet and lifestyle but i dont think it ccan do any harm to do  these things anyway. if tehre is an underlying infection then a good  diet will support your immune system to deal with it better. oh also i drank a lot of hemp oil {not hash oil now, just  the one from the health food shop} which stopped my joints cracking ive since let things slide again and have had symptoms recurr so am going back to the diet as i make fr to much noise for  a normal person!!! hope this helps and best of luck. try to find some firomyalgia support online to talk to otehrs it helps too:)


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james, Community Member
6/ 2/13 12:43am

have you taken a flouroquinolone antiobiotic such as cipro leavaquin avelox. if you have then you have flouroquinolone toxicity syndrome. believe me it is real as i have been suffering for over 2 years. feels likewhole body is tearing apart.

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Me, Community Member
9/18/13 8:50pm
I am 49 going on 75. Four years ago I was in the best shape of my life. Down to 8% body fat, exercising 6 days a week and loving it. Competing in mini triathlons. I woke one January day in 2009 with pain to the volnar surface of my left hand. Within 2 weeks I had same pain in my right hand. Within 3 months I wanted to amputate both hands because the pain was so bad. While the hand pain quickly progressed I had a sensation as though I had a poisonous vine growing up my spine. I also had UTIs and mouth ulcers constantly. Since the beginning, I have been tested for everything and I mean everything. From Lyme disease, rheumatoid arthritis, mold exposure, heavy metal poisoning. You name it, I was tested. All negative. Four years later, I can barely walk from pain in feet. Elbows and hands hurt so bad I have to take pain medicine Daily where I NEVER would have ever taken anything like that. I can't sleep some nights from the burning pain in my hips. I feel like my body is eating itself and all the tests are negative. I want to live a normal life again. The fatigue is unrelenting. The worst part is, my 12 year old son has most of my symptoms and no answer. Reply
harley, Community Member
10/17/13 9:31pm

i have all these symtoms and (in a way) am so glad to have found somebody going through a similar thing , i was diagnosed with fibromalgia and i feel very angry with this diagnoses , i am in pain all the time , i cant sleep because the pain in my back is so severe tonight, it comes and goes:(

I was training to be a personal trainer when all this crap kicked in,

It has given me severe anxiety and pain in my sinuses that you wouldnt believe , i cant fly on planes anymore, i cant walk anymore, i cant sdo anything!!:( The worst part about it is... with my diagnoses and because its not very well known, everybody thinks its a bloody joke and that im "imagining" it :(

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anne, Community Member
12/22/13 5:09am

It sounds like you may have lyme disease. Go see a lyme literate ND or MD as soon as you can! Good Luck!

Anne

 

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Helen, Community Member
1/ 5/14 2:21pm
I've been living with this type of pain also for a few years now. It all started with thick toxic blood caused by poor nutrition and not enough water. Add in some nerve damage and a fungus overgrowth and it does make life unbearable. My saving Grace has been a High Antioxidant diet with Xocai Chocolate at Centre stage. I would not be without it now since I also refuse to take pain meds. The XProtein shake gets me moving in the a.m. so I can get to work daily and the Xe Energy drink helps tremendously throughout the day. It truly makes Life worth Living again. You can get yours at www.xochocolate.ca Buy 2, Get 1 free promo on now. Reply
Beverly, Community Member
1/ 5/14 9:28pm

Hey Melissa, just checking to see if you were ever diagnosed. I am 54 have always been very active. I am having the same symptoms and have had many blood tests and everything comes back normal. I can't hardly get out of bed or do anything. I live in Alabama and am curious as to where you live. They are currently treating me for an unknown tickborne disease. I have been on doxycycline since October with no improvement. Would love to hear from you. 

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baps866, Community Member
1/27/14 3:13pm

Please ask your doctor to test you for Lupus Erythematosis. I hope this isn't the case, but you need to answers. Hope this helps. Good luck!

Pat

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jessh.mad, Community Member
2/ 9/14 8:16pm

I have the same symptoms but my bladder also suddenly died and I have a left leg paralysis I am in a tremendous amount of pain most of time, I have also been diagnosed with Small Fiber Neuropathy and it makes your skin feel like it's burning or stabbing pain and it can move all over your body not just in one place. It usually goes hand in hand with a disease called stiff mans syndrome, you should also be checked for Amyloidosis. I did not have either but they do explain a lot of the symptoms I have seen on this page. I have a wonderful doctor that refuses to give up. He found the small fiber nueropathy after I failed several nerve tests he tried that one and it was positive. I got at least one answer, still don't understand the stiffness and popping joints and excrutiating pain. With my nerves being attatched they are working on getting me to the mayo clinic to test for an autoimmune disease that attacks your nervous system. It's a rare disease that is called dysautonomia. Thank you for the Chrones heads up that actually runs in my family. I am on oxygen, I don't heal well, I have a suprapubic catheter cause I lost the ability to urinate on my own and they said they have never seen anyone come back from that. I hope any of this information helps you. I also have gasteoparisis. I wish you all luck.

 

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SandyD, Community Member
2/24/14 2:45pm

can you tell me a little about how this all started and how long you have been suffering from this? I feel like i have Dysautonomia also and I have suggested it to my doctor. They keep telling me its anxiety and fibro. I refuse to accept it because the medication hasnt helped me at all. I believe my nerves are failing me and Dysautonomia is the cause.

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Str8 up H8 Pain, Community Member
2/12/14 7:28pm
I'm 41 and have Ehlers Danlos syndrome type 3 & 7. I was 12 when I had my hip worked on because it would pop all over the place, haha! Anyhow, I had a very active life for a good 20 years after. I did had quite a few knee surgeries from 19 to well, still I guess. I couldn't understand why more joints dislocated and my skin was tearing like an elderly woman year after year, getting worse as I aged. I was finally diagnosed at 30. EDS is a connective tissue syndrome and food ol' syndromes are never fun for the Doc's or the patients. But it's rare number 1 and just not the first thing that comes to mind. It mimics the arthritis diseases and takes quite a few doc's to diagnose. I had to see a. Dermatologist for a skin biopsy, a heart doc for an ECHO, an eye specialist, a Rheumatologist, an Orth doc, and last but not least, A Hemo doc..... Wheewwwww.... I think that covered it. Like I said, Good ol' syndromes. Haha! Anyhow, now I just continue to see about 4 docs now on a reg basis. I have 2 boys and I want so bad to keep active and do all the fun stuff, but I've had to slow way down over the past 2 years. I had to come to terms with this only getting worse as I age, not better. It's literally a head- to - toe joint pain nightmare. I've actually had to educate a lot of my docs as we go. I am an RN but I know now, they really would rather I do the research and make our visit really quick and painless. ( unless I'm having another joint replaced) That does hurt, haha! My first knee replacement was a partial at 35 and it held only 5 years and a total was needed. I hope it holds up longer, so that's where the "you've gotta slow down Anj or we'll be back in here sooner than later" came in. So I actually don't know where I was going with this, haha!! But with the symptoms I see people list on here, I just want everyone that reads this, to keep in mind all of the different connective tissue syndromes out there that get over looked. Talk to your docs about ALL the blood work possible. Tell them to take all they want, because it's gonna be a good 20-30 tubes of blood. Make sure you go to a good Rheum doc that knows about & treats them. There's SO MANY rare things out there that get missed. I could've been diagnosed at 12 when they first operated on my hip. But in 1986, it was just "Popping Hip". Do your research but don't bombard the doc with too much. Take your symptoms & go from there. Good luck to all & I hope you find out whats going on and get it treated. Pain doesn't have to take your life & freedom from you. God Bless!! Anj~ Reply
help, Community Member
2/24/14 1:26pm

I'd been using my Iphone to find out what was wrong with me when I came across your post. My heart went out to you.

 

I've been fixing my problem using the Alexandra technique. I went for Alexandra training years ago and had let it lapse (too busy and too many more interesting things to do in life lets face it)

 

But when my muscles suddenly seized up horribly, after being in dreadful pain for four days I remembered my training and got into the semi supine position. Bliss to be out of agony and I was able to sleep well that night, in fact I slept for ten hours. The stiffness and pain is gradually going thank God though I think itn will be a few days yet plus I'll need to be getting into the semi supine position every day for twenty minutes, but anything is better than what I was going through as I'm sure you know.

 

Unfortunately you have to pay to see an Alexandra teacher though I suppose in the States it might be covered by your medical insurance?

 

There seems to be a link between fibromyalgia and mercury in dental amalgam fillings so you might want to explore that? If you have metal fillings you can get them removed and then detox from the mercury.

 

Wishing you all the best and a wonderful life free from pain

 

(I'm not an Alexander teacher by the way :)

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Salome000, Community Member
8/ 4/14 4:55am
Same thing happened to me at 31. If you have painful lumps-big or small-under your skin it's probably dercums syndrome Reply
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By melissa, Community Member— Last Modified: 08/04/14, First Published: 09/20/08