Pain in muscles and joints all over my body

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Shelly2011
Aug 09, 2012 5:08 am
I was diagnosed with Crohns almost 6 years ago and then found out that I had fistulizing Crohns Disease. Then in June of 2011, I had the major ileostomy surgery. This was one of the best I could have made. One day before my one year anniversary with the ostomy, I found out that my Crohns Disease had returned. The reason I had went to the doctor was due to having pain in my joints in my hands and feet. Now, I hurt all over and it is not just in the joints but also in the muscles. If I walk from the parking lot into work, I feel as if I have run a marathon. I don't sleep well because I am in so much pain. The doctors have decided that it may be inflammatory arthritis, but when it lasted more than a month and continues to get worse, the doctors have made me appts to see a rheumetologists and a neurologist. Has anyone else had this experience? If so and if you went to specialist - can anyone tell me what I may be getting myself in to? I'm so worried that I am dealing with another issue. Does anyone else have other issues besides Crohns disease and if so, are you still able to work? If anyone can give me any ideas... it would be greatly appreciated.
jandap
Aug 09, 2012 8:36 am
I have had a colostomy for nearly 30 years due to cancer. In August last year I saw my GP (Primary Physician) because like you I was aching in all my joints and very stiff in the mornings, sometimes it would take me 10 minutes to get out of bed. Most of my main muscle groups were affected, neck, shoulders, back, pelvic girdle, 'sit down' areas of my legs etc. I put it down to old age (I am now 80). The Dr. diagnosed Polymyalgia Rheumatica and put me on 20 mgs. Prednisolone. This had a wonderful effect after only one day, no more pain, no stiffness, boundless energy and a legal high like I had never experienced before. This lasted about three weeks then I came down from my high. I knew of the nasty side effects that Prednisolone can give you abd am now experiencing, so was very keen to decrease the dose as soon as I could so taking my Drs. advice last November I dropped 5mgs to 15 mgs. WRONG. This sudden drop landed me in hospital for three days. Obviously the sudden decrease was too much for my suprenal glands to take. I am now under the care of a consultant rheumatologist and am being weaned off of Prednisolone with the cyto toxic medication methatrexate.

I am not a doctor and not medically trained, I am just giving you my own experience. I hope that you do not have PMR but something else quite innocuous, it is worth checking out though. A simple blood test normally discloses PMR.

Hopefully you will feel better soon.

Kind regards.

David
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spade
Aug 09, 2012 2:46 pm
Morning Shelly,



Hang in there...I have had Crohns for 42 yrs...had a colomsy this past fall...a PhyicanAsst screw up.....did not know enough about Crohns...I paid the price. So at 61 yrs ago I now have a colomsy, that keeps prolapsing.



Now to answer your question...I also have problems with pain in muscle and joints...the steriods I took for crohns help much...but we are finally lowering them, and the pain is worse.



I do have Ostoarithris from the Crohn's also, but the Crohns is the major problem...after colomsy things got worse.

I lump as the pain in my ankle and leg are just a bit much. To sleep at night I take Small dose of

oxycodine...I am having a harder, and harder time working as my hands also lock up on me.

I have to work as long as I can, need the Health insurance or I would just work part time it is killing me to work 40-45 hrs a week...but I live in the United States..and my country has it's head up it's ass as far as health insurance...we have nothing unless you work, or you are financially wipe out first. You have to not be able to work for a year to get disabiltiy and that doesn't cover health care. Who can go for a year with income?? That is what I mean about our system.



So I do the best I can, for as long as I can. It is not easy but you can do it. Talk to your dr.'s

has to be something to help you keep functioning as long as you can. there is No magic bullet!



Spade
Past Member
Aug 10, 2012 1:18 pm
vitamin D?
Beaner
Aug 16, 2012 12:26 am
I had a fistula that perforated my colon..Crohns for many years, colostomy, reversed this past January, and I am on azathioprine to keep me in remission. I have terrible pain in my joints, the worst of it in my hands. My thumbs will lock up. My rheumatologist says it is a form of arthritis that goes Along with Crohns. I have tried to stick just with Tylenol because, as you probably already know, ibuprofen is a no no with Crohns, and I can't use celebrex with the azathioprine. Ineed to see him again because it is getting harder to tolerate the pain. I just hope this doesn't mean I'm headed for a flare of the Crohns
 

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