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Joint pain worse than gut pain- NEED help

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Crohn's Disease
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Posted 6/19/2011 7:05 AM (GMT 0)
I have not been diagnosed but I had a month of stomach troubles which ended with two days of HORRIBLE stomach cramping. For the most part I have been feeling well from my stomach- I am not completely regular but I dont have D and I dont have much cramping. Lately my problem has been migratory joint pain. I also have this weird sensation in my eyes that can turn into pain. I get muscle twiches and sharp pains sometimes even in my face. I am not sure if this is a flare or what the heck but I am really starting to freak out as the joint pain is becoming worse. I initially though chrons because of the stomach issues and had colonoscopy/upper endoscopy with scopes which came back normal. My doctor suspects Lupus but I dont think so. I also had a rash on my thigh that looked like blood and was in a steak pattern. I am so confused and tired of all of this. I really need some guidance or answers. I dont know if my chrons or whatever disease I have is manifesting itself this way. I also have to add that I had two patches of dark skin on my chest. They dissapeared after a few weeks. I have gone to the doctors and they try to assure me its not chrons because my symptoms dont match. Umm last time I checked chrons is NOT the same for everyone. I have been to three different doctors and they all to me its not chrons. I am not obsessing! These symptoms are fierce let me tell ya'. I know no one can diagnose me over the internet but some words of encouragement or any kind of advice would be helpful as I am on the brink of a mental breakdown. I am very scared because today I woke up and found that I couldnt move my arms. I slept on my back all night and felt like they had fallen asleep. My whole family and boyfriend are at a loss and I have lost my job because I cant deal with any more stress. I am trying my best to keep it together but I am so utterly confused/desperate/tired.
Posted 6/19/2011 3:49 PM (GMT 0)
If your scopes showed no inflammation, I don't think inflammatory bowel disease is the problem. Have you seen a rheumatologist? My joint pain was really bad a few years ago and a rheumatologist did an incredible history, bloodwork etc. to help me understand what was going on. {{{{{HUGS}}}}
Posted 6/19/2011 6:47 PM (GMT 0)
The reason I think its chrons is because I did have D at one point and saw blood. Not a tremendous amount but I did see a streak of blood. I was convinced I had something more serious other than IBS but then all of these other symptoms started. This was all in a matter of two months. The doctor I am seeing right now does not want to order any more tests as she feels it is not IBD. I heard that it can be years before they find something like chrons and that it is hard to find, that is why I am so concerned that they are missing something. I am going to order that they give me more tests. She is leaning towards RA and lupus. I asked to get referred to a rheumy but she said she could not do that until my blood work came back with something. I really dont want to have lupus or anything else but I am desperate. What was it that you had as far as joint pain and what did the rheumy do for treatment? I really appreciate your advice : )
Posted 6/19/2011 7:10 PM (GMT 0)
I guess if you can't get yourself to a rheumatologist without a referral, then you are stuck waiting for this DR to figure something out. Blood tests can show inflammation (CRP, sed rate), so perhaps that is a way you can get a referral.

My rheumatologist looked for evidence of ankylosing spondilytis, rheumatoid arthritis, lupus and other things, but the final conclusion was that I have enteritis arthritis, which merely means arthritis associated with bowel disease. It is not treated separately from the bowel disease. But having the rheumy involved in my care helped my GI doctor focus on treatment for my bowel that would specifically address the joint pain. He did that and I feel much better these days.
Posted 6/19/2011 8:59 PM (GMT 0)
That's very helpful - thank you. I hope my doctor can see that I am in a lot of pain and refer me somewhere. I am feeling a lil better today but I know something is seriously wrong and becoming depressed.
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