Wednesday, September 17, 2014

Monday, May 25, 2009 JUANITA, Community Member, asks

Q: BONES IN BODY HURT ALL OVER CANNOT STAND TO BE TOUCHED

MY LEGS FROM KNEES DOWN AND FINGERS AND THIGH  SHOULDERS PELVIC BONES

ALL HURT WHEN TOUCHED

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Answers (10)
kimber1964, Community Member
6/ 1/09 3:21am
IM NOT A DOCTOR BUT I FEEL THE SAME WAY BUT NOT IN MY FINGERS I MEAN MY FINGERS HURT BUT NOT LIKE HOW U R DISCRIBING IT AND MY BONES HURT SO MUCH AND IT ALMOST FEELS LIKE I HAVE BONE CANCER OR SOMETHING ELSE SERIOUSLY WRONG AND ITS AWFUL AND I HAVE FIBROMYALGIA.... THERE IS NO BLOOD TEST FOR THAT OR REALLY NO OTHER TEST EITHER BUT YOUR DOCTOR SHOULD BE ABLE TO PERFORM A TOUCH TEST ON YOU ON CERTAIN PLACES ON YOUR BODY AND DETERMINE IF YOU HAVE FIBRO OR NOT. MY HIPS HURT ME SO BAD AND ARE SO TENDER TO THE TOUCH I CANT SLEEP ON MY SIDE AND HAVE BEEN SLEEPING IN A RECLINER FOR ABOUT 4 YEARS NOW AND I EVEN SPENT 1200.00 ON A LATEX MATTRESS CAUSE IT WAS ACTUALLY BETTER THAN THE MEMORY FOAM MATTRESS AND I STILL HAVE A HARD TIME SLEEPING IN IT AND ITS FULL OF AIR CHAMBERS AND CANNOT SLEEP ON MY SIDES!! YOU'LL JUST HAVE TO TALK TO YOUR DOCTOR AOBUT IT... HOPE I HELPED SOME WITH SOME INFO...TAKE CARE AND GOOD LUCK!! KIMBER Reply
MargieDeh, Community Member
6/ 4/09 11:51am

I bought the firm Tempur-Pedic bed with the hospital type frame.  It cost about $5000.00.  It was the best investment I ever made.  I hate sleeping on my back but, I set the tv timer at 15 mins, lay on my back and most of the time I fall asleep before the tv goes off and sleep at least 4 to 7 full hours without waking.  It gets hot.  The heat from your body is like a heating pad all night long.  It helped my sleep tremendously.  The adjustable mattress frame helped the gerd & reflux and also the swollen legs.  The mattress is oneway only.  You cannot flip or rotate it. The air chambers are on the side to the box mattress. I don't think a man could handle the reflection of body heat. 

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charles1953, Community Member
8/12/09 11:46am

To Maggie Dee:

              First and foremost I am Charles A. Russell and my wife is in the same condition you were with your untouchable pain.  First I would like to say I am so sorry that you were hurting for the pain is excurcible and very hard to take.  Please excuse my spelling if I get any of the words wrong I am not that good in it but anyway I want to thank you for the info on the Tempur Pedic Matress it is what she needs but for 5 grand well I guess itr is woirth it for people to get a good night sleep especially if you are the one being used as a leg rest.  Sometimes it too can be painful and weighs you from getting in a comfortable position to get a good nights sleep.  Again I am sorry for youre pain but by the same token thank you for your expertise.

tunnel27253@yahoo.com is my email if you would like to write.

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charles1953, Community Member
8/12/09 11:47am

To Maggie Dee:

              First and foremost I am Charles A. Russell and my wife is in the same condition you were with your untouchable pain.  First I would like to say I am so sorry that you were hurting for the pain is excurcible and very hard to take.  Please excuse my spelling if I get any of the words wrong I am not that good in it but anyway I want to thank you for the info on the Tempur Pedic Matress it is what she needs but for 5 grand well I guess itr is woirth it for people to get a good night sleep especially if you are the one being used as a leg rest.  Sometimes it too can be painful and weighs you from getting in a comfortable position to get a good nights sleep.  Again I am sorry for youre pain but by the same token thank you for your expertise.

tunnel27253@yahoo.com is my email if you would like to write.

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MargieDeh, Community Member
8/19/09 10:58am

Thank you for writing.  The bed I bought was with money my mom left me.  I got the frame that is like a hospital bed that was $3000.  You can get one a lot cheaper.  This weekend I saw a commercial where there is a pillow top Tempura pedic now.  It would be a lot cooler. 

I have Fibromyalgia, degenerative arthritis, hypothyroidism and 3 bulging discs in my back from my neck to my lower back.. I fell a work when I was 27.

Over the years I have learned to tolerate the pain most the time. My doctors would not give me narcotic pain pills until I was over 40.

You have to keep mentally busy and No stress or heavy working. 

You do not quit doing everything, but it better be worth tomorrow or next week's pain before you do it. 

If I mow the grass for one hour, I might be down for 3 days.  Is it worth a couple days pay??? 

I do not know your situation but you have the WEB to read and ask about anything.

The best thing you can do is be there for her and be careful.   Help her or hire help.  Keep stress down. Good luck and God bless.

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tom, Community Member
3/31/12 4:05pm

I have the same problem with my bones, i have the sleep number bed with craftmatic ajustable bed frame. i'm a three hundred pound man, i had the heat problem so i took the memery foam pad out of the pillow top and it stopped the heat problem.but as far as the pain goes all the many doctors could come up with is i have osteoarthritis.

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devinepainter, Community Member
3/25/12 1:56am

Hi - I am giving you my email address if you'd like to ask me any questions as I so badly want to help all of you people on this message board.  I am going to copy and paste this to each of your messages because I had what you have and it was Lyme Disease, with Bartonella, Babesia, and mercury poisoning. 

 

Many will say that they have been tested but I called the most reputable lab in the country, that is IGENEX in Palo Altol, CA, and the president of the company said that 15% of people do not ever produce antibodies to Lyme and Co-infections and the longer you've had lyme the more depressed your immune system will be and the less likely you are to have a positive result.  Some people are treated for over a year before they test positive.

 

Please find a lyme literate doctor, not a Ruematologist, family doc, infectious diseases doc, or any other, but a lyme literate doc only and please confirm if it could be lyme because you may not have to live like this the rest of your life.

 

My heart breaks as I was bedridden with 3 children and constant headaches, pain in joints, bones, dental problems, vision problems and sensitive skin, you name it, but please, please seek this and perhaps you will have some real answer to your pain.

 

May God bless you, continue to seek and HE will be faithful and give you answers.

Janell

 

Moderator's note: Please do not post personal contact information such as email addresses and phone numbers.

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robin, Community Member
8/ 3/12 8:11am

hi my name is robin i am really suffering from my whole body hurting all over headaches joint pain and dental problem as well dr says blood work show a vid defis. d he is very nice but i think there is reallt something wrong this is causing me to loose sleep and i stay in bed alot.

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angela, Community Member
6/17/12 7:22pm

I have been hurting the same exact way that you explain . So far they found out I have neuropathy, I am diabetic , but also could be caused by my low iron count. I am on the butrans 20 patch and also loritab at night along with 4oo mill of neurontin 4xs daily. I still wake up my legs bones hurting  . This has been goung on for a year and four months.. I think my family thinks I am crazy ,,, but I am hurting really bad.  I just want it all to stop!

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robin, Community Member
8/ 3/12 8:15am

my sister has neuropathy how is this determined? and can this cause your hole body to hurt? yes this is really hurting my family life as well  i want it all to go away  cant a dr help me? robin

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Mary Turner, Community Member
5/13/13 6:09pm

I too slept sitting up on a love seat with my legs propt up for 2 years. I also had an eight hour job to go to. Then I woke up to a commericial about Cal-Max and was listening to the callers about how it helped them. I had a pain that went from my hip down through my leg all night. So I ordered this powder which fizzed like alka-zelser. Well, I'm happy to say, I've been sleeping in my sleep number bed, going on two years now. I have no more pain in that leg.

 

Mary T

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Sue, Community Member
8/ 4/13 11:38pm

You just described what I am going through.  In the last six months I have been diagnosed with fibromyalgia, osteoarthritis, degenerative disc disease and lymphodemia in my legs.  I too have wondered if the pain I am in is bone cancer or something serious like that.  I am seeing four doctors right now.  My orthopeadic doctor sent me to an internal specialist, who sent me to a gastrointestinal specialist, for the pre cancer in my throat, who sent me to a general physician.  They all put me on lyrica, pain medication and muscle relaxors.  However within 30 minutes or less after taking my medications I am back in pain.  Like you, I can no longer sleep on my side.  I wrap and unwrap my legs and arms several times a night in ace bandages.  I use ice packs to try to freeze the areas in pain.  I use a tinge unit almost all night, moving it from one area to another.  Sometimes I just sit up and rock back and forth and cry in pain.  Until this all started I only used pain medication after a surgery and with all the drug addicts out there I am scared to tell my doctor that I need something stronger.  I don't want him to think I am a drug seeker.  I am 44 years old but feel 84.  I cannot imagine living years much less the rest of my life in this pain.  My husband says I walk like an old lady and I do.  I am a bookkeeper and after sitting at my desk for an hour or more getting up is so very painful.  When I walk to another part of my office I have to hold onto things.  My ortho doctor wants me to start using a cane as my joints are so weak I have fallen several times.  I don't want to do that.  When people ask me where I hurt, I just reply everywhere.  The pain is unbearable.  I hope you can tell me that there is hope out there.  Did you find out what is wrong with you?  Is there a cure....is there help?

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cubbiegirl, Community Member
7/28/14 10:34am

Hi, in r oesponse to the person with lymphedema in th legs and other medical problems all at the same time.  Lymph can cause a lot of those systoms.  I have had lymph now for 6 years and it is incrediable and can cause many other thing / systoms.  wrapping doesnt work the best.  I have done lots of research on lymph cause not many doctors are up to speed on it.  I went to therapy bounced around till I found the right one, I now have an amazing PT, I can tell her I am hurting in one place and she says ok but its coming from here totally different place you would not expect.  I dont have much faith in doctors they are quick to pawn you off to a pill when they have no idea.  I could not take all those meds lyrica and the other I could not function,  so I started with massage eny who had a lymph therapist then to another and etc.  I have learn that a to take my pains to a PT. just recently i started having a lot of problems wiht my hip, dr blew it off my otgood PT is better then most doctors.  I has having pain in my hip, drs blew off but my pt found that the muscles were extremly tight in my stomach going down into the leg causing the pain in my hip, she has worked that now for w couple weeks and all better.  NO PAIN MEDS!! my recommendation to anyone living in pain find a good PT, if one is not helping find another they are worth every penny.  I can go to her with a migrain she can get rid of it in 30 min.

 

Also regarding lymph not sure where you lve but in the reserch i found that swiming is one of the best things for lymph,  I bought a pool and no matter how much pain you are in swim every day for at least 30 minutes, in the beginning it will be ruff and painful (wont lie) but you have to work through that because it will get better and the pool will be your best friend, pool therapy is like PT for lymph its like a light massage, trust me it helps unbeliable I hate the winter time I have to go to a gym to swim.  you will see a drop in the fluid the posckets will not be as much.

no matter the pain you have to stay active dont give in to the pain or it will win!!

god bless all of you out there living in pain I know whats its like.  But the best advice I can give from experience is find a great PT and once you do it will be worth paying out of pocket for as I am, insurance doesnt cover but a few visits a year.  Best of luck to each of you

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edith, Community Member
5/25/09 6:47pm

Frown i know how u feel i feel so bad even to the touch and my skin feels like its on fire..  and to top it off i have a 4 yr old and a husband who gives me no support. i could sure use a friend my name is edith and i feel very alone Cry im in so much pain !

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butterfly, Community Member
10/13/09 9:38am

Hi,

 

I had to respond I feel your pain, and if you need a friend I will be happy to write to you !!!  : )  I am 34 and have Rheumatoid arthritis, not currently being treated, between doctors (in severe flare for about 1 1/2 years, fibromyalgia for 17 years, tendonitis, osteoporosis, severe due to the fact ive had 7 surgeries for endometriosis of the pelvis, bladder, rectum and a total hysterectomy putting me into surgical menopause at age 32, and severe adhesions in my pelvis, intestines, bladder, appendix(gone also) that cause chronic severe pelvic pain. I also had such heavy periods I had 2 different occasions Ive had blood transfusions, one my hct was 5.1 and hgb was 19. Also I have a bunion on both toes (each foot) and bunnionettes (bunions on my little toes on each foot) that are due to my arthritis and scleroderma and nothing much can be done about them. I was fitted for orthopedics so I have to have a shoe insert with a metal bar under each big toe the rest of my life since my cartilage is worn away between my toe joints and the bone rubs against bone and throws off my whole foot. I also have a breast lump that gets checked by uS and mammo every 6 mo. and urinary incontinecne and celiac disease and malabsorbtion,vit d def, hypocalcemia, hypopituitaryism, Raynauds disease, Sjogrens disease, i could go on a long time. i am separated from my alcoholic abusive cheating husband and raise my only son alone. i have no support or help from anyone. sleep is so rare i dont remember what it even feels like to sleep all night. i am looking for some thing similar to a marriot bed , i have a beautyrest with a pillowtop mattress on it. can i put anything on top of it..??? oh i forgot to mention my migraines of 18 years they are disabling chronic and untreatable , im on ssdi and get them at least 2 x a week and they last from 1-4 days each. so have you found any solutions for your sleep or pain. I know  in the arthritis journals where you can order these metal bars that go at the end of your bed and hold your blankets up off of you since most people with fibro their blankets hurt their body. I havent tried them yet. let me know if you want the info... hang in there : )

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missouri, Community Member
10/25/09 3:35am

I feel like i'm dying. My whole body hurts, my fingers and hand are so painful,and burn like their on fire my feet too.  mywhole hand,lower back wrist, knees and lower legs are the worst. althogh my arms and shoulders as well as my side rib cage hurt. I can'tsleep at night because the pain is terrifing. To lay on my back is in possable, and my hip feel like they are broke when i lay on them. Whem my husband touches me it hurt. just to hold my hand or rub against my leg, makes me gry. i feel broke.  there are days i want to give up and just die.Pain pill the doctor gave me don't touch it.The pills are called vicodan.I feel like i belong in a hospital with a group of doctors like on the tv show house. So they can fix me.My doc says its colliod goiter with hypothyroidism.But say the pain is in my head.I wish someone could take the pain away.I'm afraid of what lies ahead, because i can't take anymore. me in missouri.

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sheila, Community Member
2/ 1/10 4:40pm

I feel the same way, MAN! How I would love a hug.Laughing

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JEAN DAY, Community Member
3/26/10 9:32am

I have the excact same sympoms as you do , i feel as though I am going to die from this , to the point where i have left notes , videos for my kids . I am so afraid , been to my doctor , she said " it's probably depression ' but i have never been happier in my life ? I cannot stand anyone to touch my bones and have to sleep on my back my pelvis being the worst , my feet also feel as though they are on fire , was also given pain med called hydrocodone , like you does nothing and like you , i feel as though there is no help out there especially when youre doc wont really listen to me or my husband and is pushing the depression b/s , never thought i would find anyone who is going through what i am going through , its like you do just want to give up , not so long ago i was as healthy as any woman of my age could be .. i feel for us both , and wish we could get a doctor to help us both .please feel free to write to me ..... i am in MD.....

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Melissa Erickson, Community Member
5/13/11 9:58am

Have you been checked for LUPIS? This is signs of Lupis..If you do not have health Insurance. Call your local Health Department and get an appointment.

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HOPE11, Community Member
7/29/11 8:33pm

HI I FEEL THE SAME WAY I HAVE LUPUS AND I HURT ALL OVER IN PAIN RIGHT NOW I DONT HAVE NO ONE TO HELP ME AND I HAVE TWO SON AND A HUSBAND AND THEY DON'T DO NOTHING BUT SAY WHAT FOR DINNER I AM AT A POINT I WANTED TO SIGN MY SELF INTO A NURSING HOME THAT HOW BAD I FEEL. IF YOU EVER NEED SOME ONE TO TALK TO I AM ALL WAY HERE

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Ben w/RA, Community Member
10/19/11 9:08am

Jean,

Have you been diagnosed with RA? You sound as if you might have it, RA will cause depression. I started fisrt with depression but because of pain in joints and all ove the body sickly fatiged. RA will bring on a serious case of depression!!! I take Prestique and it helped, I also take oxycodone for pain along with humira and methotrexate. I'm soon to go onto Orencia "biologics' intrveneous in clinic which they say is very good for pain fatigue saposedly gives you energy boost . boy I could use that. I hope this helps you.

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Ben w/RA, Community Member
10/21/11 9:23am

I have done the same , I left letters to all my family and I'm 50 yrs old. Thats how terrible RA is!!! Everyone w/RA knows and the need for me to summerize not required. I feel for you..

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JULES !%$, Community Member
5/ 5/12 9:36pm

Hello. My mother is 54 years old and called me tonight crying. She has horrible pain in her pelvic area and she said her whole body hurts to even touch. Im so worried for her. She plans on going to er tomorrow as this has been happening for days. Only one symptom she has that you didnt list. NAUSEA....Please help!! If you have any suggestions itd be greatly appreciated!! My mom is terrified and just completely in horrible pain. Did you ever have naeusae??

 

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rmjones777, Community Member
11/28/10 9:50am

Dang and I thought I was having it rough having been sick since age 16. Hysterectomy at age 26, 6 miscarriages, total colon removal by age 33 reversal of colostomy by age 34, gall bladder removal by age 42 and now I am losing the pigment of my skin, have interstial cystitis in bladder, getting the UC back in the small intestine now, Fibromyalgia, cluster and migraine headaches and I generally hurt all over. I am in bed now from Thanksgiving day on. Because I over did it cooking for 6 people I am now in bed every since. But YOU OMG YOU have been through HELL! I feel BLESSED just reading what you have been through. It gives me more of a positive outlook on my own life. Thanks for sharing.. I have a book I wrote that just got released by the way. www.publishamerica.net/product37075.html

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COUNTRYGURLS09, Community Member
3/18/12 9:20pm

SERIOUSLY I THOUGHT THAT WAS ME WHEN I JUST READ THIS . WOW I AM SORRY TO HEAR  ABOUT THE PAIN THAT YOU BOTH ARE IN . AND I AM CURRENTLY GOING THROUGH EVERY TEST THERE IS, FOR ALL OF THE SAME AND SOME ADDED PAIN AS  LUPUS  TO  CONTRIBUTE TO FIBROMYALGIA AND RMA. I JUST FOUND OUT IT MAY ALL BE RELATED TO THE THREE LUMPS ON MY BREAST CANCER 2  THE PAIN THAT IS ANYHOW IAM JUST TRYING TO SURVIVE ON ALL THE 20 MEDS A MONTH EXPENSIVE AND TRY TO JUST LIVE WHILE I CAN IVE ALSO GOT 4 GRAND CHILDREN I AM 41 BUT HAVE HAD THIS SINCE I WAS 31 STEADLY GOTTEN WORSE. WELL ILL SAY A PRAYER FOR YOU EVERY DAY .ITS NO FUN LIVING DAILY IN PAIN . NO BEDS IVE TRIED OR ANY PILLOWS HAVE BEEN HELPFUL AS OF YET . I THINK IVE TRIED ALOT OF EVERYTHING , BUT MY HUSBAND ISNT VERY NICE ABOUT IT BECAUSE HE DOESNT UNDERSTAND PAIN. HE IS WELL SO HE NOW GOES TO COUNSILIING TO UNDERSTAND MY PAIN . WOW . I TRY TO KEEP POSITIVE THOUGH IT WOULD BE NICE TO HAVE SUPPORT GROUPS TO SHARE WITH . AND LISTEN ALSO. I HOPE YOU  HAVE A BLESSED AFTERNOON Embarassed

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COUNTRYGURLS09, Community Member
3/18/12 9:22pm

SERIOUSLY I THOUGHT THAT WAS ME WHEN I JUST READ THIS . WOW I AM SORRY TO HEAR  ABOUT THE PAIN THAT YOU BOTH ARE IN . AND I AM CURRENTLY GOING THROUGH EVERY TEST THERE IS, FOR ALL OF THE SAME AND SOME ADDED PAIN AS  LUPUS  TO  CONTRIBUTE TO FIBROMYALGIA AND RMA. I JUST FOUND OUT IT MAY ALL BE RELATED TO THE THREE LUMPS ON MY BREAST CANCER 2  THE PAIN THAT IS ANYHOW IAM JUST TRYING TO SURVIVE ON ALL THE 20 MEDS A MONTH EXPENSIVE AND TRY TO JUST LIVE WHILE I CAN IVE ALSO GOT 4 GRAND CHILDREN I AM 41 BUT HAVE HAD THIS SINCE I WAS 31 STEADLY GOTTEN WORSE. WELL ILL SAY A PRAYER FOR YOU EVERY DAY .ITS NO FUN LIVING DAILY IN PAIN . NO BEDS IVE TRIED OR ANY PILLOWS HAVE BEEN HELPFUL AS OF YET . I THINK IVE TRIED ALOT OF EVERYTHING , BUT MY HUSBAND ISNT VERY NICE ABOUT IT BECAUSE HE DOESNT UNDERSTAND PAIN. HE IS WELL SO HE NOW GOES TO COUNSILIING TO UNDERSTAND MY PAIN . WOW . I TRY TO KEEP POSITIVE THOUGH IT WOULD BE NICE TO HAVE SUPPORT GROUPS TO SHARE WITH . AND LISTEN ALSO. I HOPE YOU  HAVE A BLESSED AFTERNOON Embarassed

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Imnotlaughn, Community Member
12/16/09 8:21pm

Hi Edith, I am so sorry to hear about your medical pain etc. I, like you, have very bad pain which started in my neck from a prior car accident; slowly began to spread and currently inhabits my entire body. My pain seems to be heightened by the cold and goes deep into my bones! Have you seen a doctor to rule out fibromaylasia?  You might want to start there, and possibly look into therapy for yourself to alleviate any other symtoms associated with depression, anxiety, sleep disorders etc. You could also look into a variety of support groups in your area. A great resource is the Internet. Good luck to you! TC

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KiMMi, Community Member
7/12/10 6:54pm

I too suffer from pain that is undefined, I also live in a home with 2 teenage boys and my husband, they have no concept of pains that they can't feel.

I have recently gotten a hip belt like ones used with pregnancy, it does hlep with the pressure but for some reason the pain in my pelvis seems unrelenting, i am not sure what to do, I have seen the same Drs for the past 4 years and they do nothing but treat it with meds. I am sorry that you are suffering from so much pain, do u seek treatment? There is a clause through medicaide that allows women to get their yearly physicals as well as treatments for anything they find during those visits. Im not sure what state you are in but you should look into it. Human Services Department. Hope this helps, keep in touch. kim garcia :)

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Karen Brewer, Community Member
2/11/12 11:03pm

Edith,

   I can certainly have sympathy for you!  I have been leaving in a nightmare  for 4 years now.  My bones have hurt all over my body, but it migrates.  It might hurt one bone one day and another the next day. I am leaving my spelling mistakes on purpose so you can see how lymes has affected my brain.  I can not remember anything and I can barely add and subtract.  I had a great job and lost it due to this disease.  My husband left me for another woman.  I have been bed ridden for the whole entire time.  My whole family treated me like I was a fixture it the house.  I have cried so much that I don't think there is any tear left.  I am soooooooooooooo lonely. If it had not been my faith in the Lord, I do not know how I would make it.  I feel like I am in a nightmare and I will wake up and it will all be gone. I have so many symtoms now that I can not even list them all.  A lyme specialist diagnosed me with lymes, but my mother did'nt think i had it, so I have been to every doctor you can go to, as I continue to worse and worse.  Watch Under My Skin on utube and i think you can relate.  luv ya and God bless.  Karen

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jesus our lord, Community Member
7/ 5/12 3:52am

jesus christ is the only one that you need to save you from your pain and when your husband isnt here for you and your child, god wants to let you know that your not alone and he loves you!!! i hope all goes well.

 

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MargieDeh, Community Member
5/28/09 2:23pm
I hear you lady. I have not dated since 1991. I was married for 8 years before this started. I cannot be touched either. Today I am ready to scream it hurts so badly. But it the outer nerves from my shoulders to my feet the is causing all my muscles to spasm. I am 57 and had fibromyalgia, degenerative arthritis, hypothyroidism, and bulging discs in my neck and spine since I was diagnosed 31 years ago. I can usually block the pain until I get home from work, but today it very bad. The only relieve I get is from prednisone. Not many doctors will give to you until there is nothing left to try and you are over 40. I pray your pain gets better and all your days be stress free. Reply
MargieDeh, Community Member
5/29/09 8:40am

What started FM?  I tripped and fell on my knees on concrete.

My children were 3 and 6 when I divorced.  I raise them alone.  My parents were not supportive either.  I printed everything that was out in the 80's on FM and gave to my family to read. 

They did not read and never understood why I slept or read all weekend.

My daughter, now 37, has a friend with FM.  She comes every weekend to help me now buy sweeping or mowing.  She is beginning to understand a little.  

A high stress job like mine will keep you in an unbearable constant pain.

I am taking Lybria now for 4 weeks and it's going into the trash like all the others.

Again, keep as stress free as possible.

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Christine, Community Member
9/30/09 11:17am

have you even been tested for lyme disease? i was recently tested, bc my whole body hurt, it felt like it was in my bones.  you should go online and search lyme disease and learn about it.

 

www.canlyme.com/patsymptoms.html is a good site read it all and you may find what you are looking for.

 

there are a list of misdiagnoses and fibromyalgia, degenerative arhritis are both on there.

lyme disease is misdiagnosed all the time bc it can appear to be something else when really its lyme disease ,and ppl who are tested often get a false negative unless they go to a lyme disease specialist.

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MargieDeh, Community Member
9/30/09 2:50pm

Thank you for the Information. I have never had a tic latch onto me. My kids did.

I know I have Fibromyalgia and a couple other problems. This started when I was 16 after childbirth, which can start it.  Then a couple bad falls in my 20's (the 70's) and it got worse. The 80's I was in my 30's and the stress at work and being a single parent with 2 teenagers really made it bad.  I could not dance or do a lot of activities.  As I have grown older the stress is not constant. I gained some weight the fat protects the mucsles and being cold all the time.  I am so much better for the bed and good rest I get now. A couple weeks every month are tolerable without pain med's.  Thank you again. 

 

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devinepainter, Community Member
3/25/12 2:13am

I totally agree with the previous post to be checked for lyme.  It is in mosquitos and can be passed through sexual contact and giving birth.  I have it and didn't know it and gave it to all my children and now that I have put the puzzle together my parents have it and we all live in any area that doesn't have lyme according to the doctors.

 

Not only that but nymph ticks are smaller than a ball point pen dot, you would never see it.

 

The fact that your fibro problems started after a fall makes me think lyme all the more.  As injury and stressful events are major triggers for latent lyme.

 

A lyme literate doctor is the only one you should see, not an infectious disease doc even if they say they treat lyme.  they may but only if you meet certain criteria.  Most lyme tests with show a negative, mine did.  But find a doctor who uses IGENEX in palo alto, CA to see you.  Don't rule lyme out because you may be able to not live the rest of your life in pain.

 

Sincerely,

Janell

 

Moderator's Note: Please do not post personal contact information such as email addresses and phone numbers.

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queenie, Community Member
12/ 2/09 1:30pm

I am new to this,but I totally feel your pain. I ache from head to toe, fibro,osteoarthritis, Chiari malfomation, decompression surgery in 2008. All the doctors try to send me away, referring me from one to another. I am so tired emotionally and physically. I had a complete emotionally breakdown in 2006, had been on meds for depression since then. I am 55 years old and would love to retire,but due to financial obligations I cannot at this time. I struggle with everyday. I depend entirely on GOd to make it.

I get some support from my family,but to be honest most people simply do not understand. Sometimes the pressure to just function is too much, I just want lay down and quit trying.

I do not know you,but I CARE!!!

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MargieDeh, Community Member
12/ 2/09 4:06pm

  Thank you, I care about you too.  You must endure. I can not file for SS yet either although my doctor will fight when I am ready.

  I am alone.  I quit all antidepressants, as did my mom, several years ago.  I had been on/off since I was nineteen.  You MUST have a Hobby! or something to focus on so the pain doesnot take over.  You Must get out and walk or shop when you have a "good" day, which means you can move with a pain pill.  I would not be here except for my GOD.  I will deal with each day as it comes.  Don't let the pain stress you.  It will make it worse.  Don't worry and stress yourself.

Focus on things that make you happy.  I like living alone.  I have a dog and cat. 

I love Facebook, TV and crocheting dollies.  I do my heavy cleaning when I have a week off so I can rest between working.  I still hurt from Friday cleaning and Saturday cooking, but it was all good.  When I get into bed tonight I will raise the head and legs of the bed and slowly let it down until I am flat.  I found that sleeping on my back is a dead sleep and I wake up easier and not everything hurts.  I use xanax to sleep.  It is a muscle relaxer also.  God Bless and keep you strong.

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queenie, Community Member
12/ 3/09 6:44am

I appreciate your reply. You are right, I have to endure!!! My doctor is the same, he said he is ready when I am for the SS.  I am sorry you are alone. I have been there too. I do take Wellbutrin,since coming off of Cymbalta caused a major bout of depression for me. I do walk and enjoy some shopping. I too have to take a pain pill for those days..I have started to really get into the Bible and that has really been my encouragement and such a source of strength. My husband does some of my cleaning so I am blessed there and he is patient. A day of heavy cleaning does me in totally.

I cannot look up or bend over due to the mesh screens in my skull that are holding my brain in place. My company will not allow me to work if I take Xanax??

Enough complaining, God is so good to me.

 

I will put you on my prayer list, and thank you again for your note. I will look forward to hearing from you. We must fight this together, there is no giving up.

 

The Lord,make his face shine upon you and be gracious to thee.!!

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italianwife, Community Member
1/15/10 1:17pm

Hi I was reading what you said about the pain you experience and I feel your pain as I have the same thing and It feels as though my entire skeloten aches like bone crushing pain. I am 40 and My husband has used the word hypocondriac ( not sure how to spell) Really reallymakes me feel sooooo bad because this means he feels that my pain is not real. The last job i had I fainted  in front of cusrtomers because i get sooooo exausted and weak. I seriously cannot hold a job due to the constant weakness and pain. I try literally everything and right now I am actually trying "The law of attraction" where you are supposed to think posotive thoughts and visualize that you are well?  I will do ANYTHING!

I feel Im too young to be in this positionand makes me angry and resentful ya know?

Just wanted to say hello and tell that you are not alone in this. Think positive!

                                                                                                            Renee

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queenie, Community Member
1/15/10 1:34pm

Thank you so much for your reply, I am hanging on. Really what choice do you have . There is no where to give up. I do care about you,you are young. It is a bad thing to be in constant pain and have suggestive remarks incinuating you are faking.Why would anyone want to pretend to be in constant pain. I will say a prayer that your husband will be more in tune with you. My husband has never had much pain,( which I am glad) , but that does lead to his not understanding or sometimes being indifferent to how I suffer.We are suffering too,boith mentally and physically. Chronic constant pain cause great emotional stress.

Bottom line is you have to take care of YOU!! I am trying to hold on to my job also,as I have been here for 25 years and so many people are with out a job.I don't want to be ungrateful. EVERYDAY is a struggle, I do not know how much longer I can do this.

I totally understand about you exhaustion and your weakness. Please take care. Do you sleep well. Have you been diagnosed with Fibromayalgia or Chronic Fatigue. If not you need talk to your doctor about these diseases.

I also know about the angier and resentment. My husband does not work and I feel like I have no options. I have had this pain for so long,probably 15-18 years. I feel like I deserve a break. Financial obligations are forcing me to continue to the point of total exhaustion and causing me to have a very negative out look on all things.

Your beliefs are exclusively yours and I would not dare impose on them but my faith is all I have. I could not make it with out it.

you will be in my thoughts and prayers, please as I said take care of YOU!!!

unfortunetaly no one else except God will.

please keep in touch.

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Chris, Community Member
5/13/10 11:18pm

I too have that same pain. My bones HURT so bad I cry. Its mostly the legs and hips. I have been given pain meds that don't work. Antidepressants that make me tired and don't work. But the prednisone, always my docs last resort makes me feel absolutely pain free for about two weeks. Don't know what it is and I am very frustrated with the suffering. My job is in jeopardy and as a single mom of two I can't afford that. Any suggestions would help. Good luck to everyone else. I do feel your pain.

 

 

Chris in Maryland

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Vicky., Community Member
9/ 8/11 8:47am

I was reading   what u said about hurting all over the body and it hurts to  touch.. My best friend Trish is having the same problem.. She told me yesterday that it even hurt to sit yesterday while in dr office.. they did  give her a shot. but I had to inform her she going have to xcerrise that arm or it go stiff on her and  ice on it. she has fibrom. as well. althro her dr  has given her something to take..  I don't know if that going to work. All I can say.. when I read  everyone pages.. Im so bless to have only what I have. I have asthma. nothing to what u all are dealing on  a daily basic..

 My prayer go out to u.. God is in control and He will never let u face nothing alone that  u can't handle..

 Father God I ask you lay your hand on this dear lady, Heal her  from this pain she is  dealing with. Give her a peace  that  she see in you. and Give her strength each day.  I give u that in your  name. amen

 

I Can Do All Things Through Christ Which Strenghthenth Me. Philippians 4:13

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CELESTE CHANDLER, Community Member
12/19/11 12:49am

HI MARGIE. I HAVE THE SAME EXACT SYMPTOMS..I WAS DXED WITH OSTEOARTHRITIS FIRST,, THEN FIBROMYALGIA. I GOT SICKER AND WAS PUT IN THE HOSPITAL AND THATS WHEN THEY FOUND I HAD LUPUS. NOW IM SUPPOSE TO GO BACK TO A NEUROLOGIST , CAUSE MY RHUMIE THINKS OTHER THINGS ARE GOING ON.. I CAN HARDLY WALK AND ONLY SHORT WAYS..I HURT ALL THE TIME.IM SAD, I USE TO BE SO PRETTY..PREDNISONE HAS MADE ME GAIN WT AND IT MAKES ME IRRITABLE SO I TRY NOT TO TAKE IT. I CANT TAKE NARCOTIC PAIN MEDS CAUSE IM ALLERGIC TO ALL OF THEM. I HAD ONE KNEE REPLACED TWO YEARS AGO, AND MY OTHER ONE IS READY FOR SURGERY TOO, BUT IM NOT. IM 55 YEARS OLD..MY KIDS ARE ALL GROWN AND BUSY. I KNOW THEY LOVE ME BUT DONT UNDERSTAND. IMUST SAY THE WONDERFUL MAN I GOT NINE YEARS AGO TRIES TO HELP, BUT SINCE HE HATES PAIN AND GOES NUTS WHEN HE GETS A COLD, JUST CANT UNDERSTAND..ANY IDEAS OF ANY MEDS YALL ARE ON THAT MIGHT HELP.. CYMBALTA?? I HURT SO BAD.. MY LIFE IS PASSING ME BYE.

 

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painful, Community Member
3/19/10 5:53am
I am feeling achy, more like my bones hurt. The worst feeling is the bottom of my feet, feels like all my bones are fractured and I can barely walk. I am only 38 and I have 2 small children to take care of. I haven't gone to the doctor yet but like other people mentioned, it feels like I am dying. It's all internal, I don't like the touch feeling, my hips are killing me, I get a severe pain going down my leg when I lay on my side. Does anyone else feel it the worse on the bottom of their feet? I'm not even on my feet much and even my legs feel like they are going to collapse. I am going to see a doctor and hopefully find out whats wrong. Reply
MargieDeh, Community Member
5/18/10 9:27am

Hi,  I have Fybromyalgia 35+ years now.  The pain will move to different parts of your body. If you have gained any wieght it will hurt your feet worse than bone spurs.  But so can lack of certain vitamins.

You need to get to a doctor now!  It could be one of several disorders. Some of which could easily be treated.

Blessings to you and your little ones.

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Betty, Community Member
6/ 9/10 1:27pm

My doctor told me last week that I could have Fybromyalgia. He gave me a prescription for Tramadol-50 mg tablet, but I have not pick it up yet. I thought that I was hurting because of the air condition.  I do just find when it is warm.  I will be praying for you for God to heal you as well as myself.  God bless you.

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MargieDeh, Community Member
6/10/10 8:21am

Thank you and let me know how you feel.  I am on Facebook as Margie DeHaven

There are a couple of informative and support groups for FM and what goes with it. Mine is in both shoulders now for the past 4 months. 

Blessings to you and your family!

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Gina, Community Member
1/25/11 2:56pm

Yes I have fibromalyacia but the cold make it worse....

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Bones in both feet, Community Member
7/23/10 12:29am

I had hip surgery March 18th of this year and shortly after returning back to work 3 1/2 weeks later, too soon really my feet starting hurting a lot and I thought it was from walking on concrete again but the pain became worse and worse.  I worked 1/2 day and went to physical therapy and driving home my feet hurt so bad that I was in tears, I took 2 Hydro 10-325 and it did not even touch the pain, this was almost exactly 6 weeks after my surgery.  I first thought that it was heel spurs since I had those about 15 years ago but then the pain was in the bones on both sides of my feet and all of my toes.  I have never had a broken or fractured bone but the bones start out feeling fractured then severely broken.  I have had every test under the sun and now they are calling it Chronic Pain Syndrome (They don't know basically)...  One thing for sure it is not FM; everyone wants to say that now that it is the new thing...  Now I am going to pain management since they cannot figure it out and I am maxed out on meds just trying to get back to work after 11 weeks of setting at home. 

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jans31990, Community Member
7/29/10 7:30pm

Help!  I don't know what to do and my Doctor doesn't really want to help me, all she says is that she won't prescribe narcotics.  I DON'T WANT ANY!!! I read over this blog and I see myself in so many of you. I am exhausted and in constant pain. I have had surgery on my feet for multiple bone spurs, I have arthritis in my hands lower back and right hip.  While all that bothers me it's the burning ache I get at night while trying to sleep.  I spend most night crying because it feels like every inch of my skin has this burning ache to it.  Deeper pain keeps me twisting and turning all over my bed until 6am then I usually fall asleep for a couple hours. Wake up at 8am go to work and try to function.  I don't know if anyone has any suggestions or not.  I live in a small town in Florida and most of my friends and family think I'm crazy.  Am I? js

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ldy, Community Member
8/10/10 12:17pm

Dear Bones ... Yes, no one really understands.... I have read most of the posts here..and I believe we all have found this place.. because..we were searching...for answers.

In my case , I have been incredibly healthy my entire life.. worked endlessly loving it and very successful... could work every day as many as 16 hours a day.. in very highly multi tasking.. executive positions.  Two and half years ago.. I fell..on ice.. hit my head and suffered a TBI... with multi symptoms.. from Severe Vertigo..sensory loss..(numbness) in all extremeties..and continue to fall..stumble.. etc.  Rather than go on...about this.. rather I'd like to offer some insight into much of what is going on here... yes there is Chronic Pain Syndrome.. but, take a look a CRPS or another name for the same thing is RSD.. regional pain dystrophy....  I agree that it is not fibromyalgia.. as..this is just a diagnosis that many docs...lump everyone under.. as the ads say.. "overactive nerves".   But, think clearly now about over active nerves... look at the cortex and the thalamus.. axons..  all are a part of the brain message center.. which either sends the the messages on the nerves (transmitters) along the way...they either do it efficiently or not..    Like me..caused by trauma..or chemical... or drugs..surgeries....and a large number of causes... I have a european neuroligist...who has finally diagnosed me with CRPS... but, long before this I had already figured it all out... that it was caused by changes in the brain...  Look at your symptoms...take them individually and I think all of you will see...there is a huge ...difference between muscle spasm pain...fibromyalgia and as we all say..."bone crushing pain"...like us...and feels like the bones in the body are being sqeezed.. you are not making this up...it is not phsycological ... (of course one can have those symptoms under the circumstances)  You are not a hypocondriach (can't spell it either LOL).   It is the brains nerve center.. messing you up...  Most doctors.. while many are OK...don't stay onn top of ll of this... and guess who tells them about new meds... it is the drug..salesmen.

Blessings all. stay in touch. let me know

  

 

 

Please...all who read this 

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NoPainNoGain, Community Member
9/20/11 2:31pm

I have the same exact pain and have been doing searches to see what it is. I was dx'd with Fibromyalgia and Chronic Fatigue 9 years ago and it gets a little worse each year. The last 6 months it's like my ankles are broken and walking is hard because of the piercing stabbing pain in the achilles tendon area, the back. My calfs also ache but it's my ankles that make walking hard until I ghet used to the pain. the back of my foot the ball part and above that where your sandal strap goes are so sore. I wear croc's even though they are out of style becuase they don't make my feet hurt as bad. I put off going to the doctor because he will just say it's fibro but It feels more like arthritis?

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robin, Community Member
8/ 3/12 10:14am

hi i am 48 and i have been seeing my doc with no great succsess if its not one thing it another i am in so much pain and i think i am going into the great woman problem thing my dr says this can cause body aches i do not believe this i have tryed every thing for pain please help   robin

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robin, Community Member
8/ 3/12 10:20am

no wonder people dont have answeres for me these posts are being answered by responsed people back in 2010 robin

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Betty, Community Member
6/ 9/10 1:12pm

I do not have an answer for it.

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rmjones777, Community Member
11/28/10 9:51am

Get checked out for Fibromyalgia

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Gina, Community Member
1/25/11 2:54pm

I have the same problem my name is Gina and I my doctor diagnosis me with fibromalaycia it works once it build up in your body but at the same time it take a long time so I was take advil 200mg 2 2 times a day. Also moving help taboo keep moving  sitting still will hurt. Also it's gonna take time but it works.

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squirrel63, Community Member
1/25/11 3:57pm

I am so sorry that you are in so much pain.I will remember you,and all other pain patients,when I pray.I too am a chronic pain sufferer.I can totally feel for you.

 Has your doctor did an exam to see if maybe you may be suffering from fibromyalgia?That causes widespread pain,from over active nerve impulses.

My mom and brother both suffer with that same thing,and were both dx with fibromyalgia.There are several great meds out now,for that dx.

 Please keep in touch,and let me know how you are feeling.I care.God Bless!Smile

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Gem, Community Member
9/21/11 10:52am
For 2 weeks now every bone in my body hurt and tender to touch, really worried what causing it, I'm 30 and just had baby 8 weeks ago, had fbc checked normal, thyroid checked normal and and blood test to check for athrightis etc not spelt that right but they were normal.. Any ideas anyone?????? Reply
K, Community Member
10/ 8/11 5:47am

Like so many of the people posting here, I am all too familiar with chronic pain of Fibromyalgia & residual damage from numerous injuries that have been life-altering. Sleep challenges go with the territory & bone pain increased over the years, making it even more difficult. Burnt out adrenals & aging have done quite a number on this bod too & with apparent thyroid dysfunction going on I sought out a fresh approach with a new dr. who did blood tests showing very low Vitamin D (among other deficiencies) which can cause bone pain & sleep problems. A very large portion of the population is deficient in this important nutrient. The doc had me start with 5,000 I.U.s of Vitamin D3 (from Cod Liver Oil...I buy softgels in 1,000 I.U. increments; fortunately, it's not expensive), gradually increasing the dosage up to 12,000 I.U.s, which is what I take regularly now. While the fibro & residual injury pains continue, I've noticed that much of the deep, intense bone pain has decreased, except in my feet (the tops of them), which is what led me to this website. Maybe I need to up my dosage.....I hope this info helps. 

FYI ~ A friend shared the following link with me that lent a sense of support & understanding. Perhaps it can do the same for some of the Fibro folks out there & help open the hearts & minds of family members & friends as well. Smile 

www.thirdage.com/news/fibromyalgia-stigmatization-and-its-impact_10-6-2010   

PS ~ It has been helpful to me in the more difficult times to seek the uplifting power of emotional healing found in voices of spiritual wisdom, empathy, & love. 

With  prayers for all ~ K     

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Sarah42, Community Member
10/19/11 7:45am

I am hurting all over especially when  lay down to sleep it feels like a torture chamber.I dont want to take sleeping pills again but Igues sthats the only way i can function.please tell what I can do I am being tested for lupus.

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By JUANITA, Community Member— Last Modified: 07/28/14, First Published: 05/25/09