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02-16-2013, 09:06 AM   #1
nogutsnoglory
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Secondary Fibromyalgia

Anyone else here deal with secondary fibromyalgia that's resulting from Crohn's?

I am so sick of the muscle aches, bone pain and tingling from nerves throughout the body.

I find hot showers and baths make it much worse which is strange since most find those helpful.
03-01-2013, 05:44 AM   #2
annawato
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Yes I do NGNG. My whole body aches all day every day making it impossible to do the smallest things and this is despite the painkillers I'm on. Its like every cell in my body is hurting! Its actually more debilitating than my crohn's symptoms. Like having the flu each and every day. i don't know whether it is caused by the crohn's or is another illness. But I fully commiserate with you. I find hot water helps but since I've got wounds that I'm recovering from its a bit difficult to soak. Plus its summer here so not so enjoyable with the heat.
i also get numbness in my toes and burning hands and feet so something is going on with the nerves. Do you get this too?
I don't know how to help it. supposedly exercise should help, assuming you like me had the energy to exercise. Other than that, painkillers?
sorry i can't help you more, other than to offer you my sympathy.
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you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
03-01-2013, 10:10 AM   #3
SarahBear
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Hi, NGNG.

I haven't been diagnosed with fibromyalgia, but my mother has it and I do display symptoms of it. At this point, my doctors are too busy blaming it on my Crohn's (which is in remission, by the way) to be willing to check for other possibilities. So, I don't know for certain if I have it, but I'm also pretty sick of the pain.

Just wanted to try to give a little support! I hope things get better for you soon.
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03-01-2013, 10:19 AM   #4
polar1920
 
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I have arthritis and Fibromyalgia. I have just finished a 6 session course of hydro-therapy. Every bit of me aches and is in pain. The hydro-therapy did help to a certain extent, but i have had to change my way of doing things.
I don't pick my Grandchildren up, i have to get down to their level. I havent to hoover the whole house in one go, just do a room at a time. The painkillers dont really work, but others leave me doped up and I cant live like that.
Its hard to get a balance without upsetting the Crohns. I feel so tired all the time. I feel I could sleep all day and it wouldnt be long enough.
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Crohns Disease (diagnosed 1993)
IBD
Arthritis
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Azathioprine, Pregabalin, Topiramate, Quinnine Sulphate, Folic Acid, Budesonide.
Love my Partner and Family very much. Two Grandchildren and one on the way (due date June 2013)
03-01-2013, 02:15 PM   #5
ThanksP
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I feel like I have some similarities to Fibro. I'm currently waiting to see a Rheumatologist because my ANA titre count was high. Primary doc thinks it might be Lupus but whatever it is, it's TERRIBLE. I can't do anything, I have no energy, yet can't sleep, my neck is swollen, my heart is beating out of my chest, my ears are ringing, every joint is killing me, and I'm completely in a fog. I just want this to end. I don't know how people live with this on a long term basis. I hope all of you find relief soon!
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03-01-2013, 02:17 PM   #6
SarahBear
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ThanksP, have you had a blood test to check for Lupus? It's my understanding that Lupus needs to be ruled out before you can be diagnosed with fibro.
03-01-2013, 04:24 PM   #7
ThanksP
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Sarahbear, I had an ANA titre test which is used to help diagnose many auto immune diseases such a Lupus, Sjogren's, Scleroderma, etc. It came back 1:640 which is definitely positive. The rheumatologist will do further testing to find out exactly what is wrong with me. My appointment isn't for another week. As I said above, I do not think I have Fibromyalgia, but I have some of the same symptoms and I feel for anyone who has to live with them on a long term basis.
03-02-2013, 11:27 AM   #8
JKLT
 
Join Date: Feb 2013
Location: Lafayette, Louisiana
For those of us who didnt know, Fibromyalgia is a disorder of the nerve endings that is a problem with misfiring brain signals. I had a rheumatologist explain this to me and he said basically there is no real bodily cause for the pain in fibro, it;s all in the head, literally. They use drugs like Cymbalta, Savella, and lyrica to treat fibromyalgia. He even showed me charts and graphs of studies done to prove this. Well in that case I believe that most of us with fibromyalgia symptoms do not have a brain/nerve signal problem. I think that something has damaged these nerves and is causing this pain. The pain is real and it has to have a real cause. Read up on fibromyalgia and determine for yourself if this is all in your head or if you could have something causing the particular pain you are experiencing. Another place to research is reading up on nerve distribution of the spinal cord. For most of us these pains come from somewhere in our spine being irritated or compressed. Hope this helps.
03-02-2013, 11:33 AM   #9
JKLT
 
Join Date: Feb 2013
Location: Lafayette, Louisiana
also, FYI, just thought of mentioning this since some of you have posted about elevated ANA's, lupus, or MS symptoms. You should read up on all the info out recently to do with aspartame. Apparently many were misdiagnosed with lupus and MS, memory loss, and muscle aches and pains, and they were able to pin it down to being related to aspartame in diet drinks and other products. They didn't have these diseases after all. Once they stopped drinking diet sodas and using other products with aspartame they cleared up. I'm not saying that this is what you all have, but I thought it was worth mentioning. I myself just stopped drinking the equal in my coffee in the mornings after reading the article about that. I'm not sure anythings changed yet, but then again I just stopped only a week ago. I don't need anything else causing me problems. Crohn's and plexopathy are plenty enough to deal with. From now on it's real sugar for me. Hope this helps someone out there.
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