Joint pain, but no diagnosis

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Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 5/21/2009 8:23 PM (GMT -7)   
I've been having joint pain since February, mostly in my fingers and wrists and sometimes knees and ankles. I've had throbbing, tingling, achey, and sharp pains, and stiffness in the morning. Usually the pains last for a few days, but I've been doing well for the past few weeks. I've never had swelling.
I went to the rheumy today and she said everything looked well (probably because I haven't been in pain recently). But my fingers have been hurting since the appointment when she squeezed my fingers. She said that I probably had some sort of inflammation and that Remicade (which I'm on for UC) helped to improve it; she was hesitant to give an actual diagnosis because she couldn't pinpoint anything at the moment and my blood tests (Rh factor, ANA, dsDNA) were all normal.
Is it possible I could have RA but the Rh factor is normal because of Remicade?
Are any of you musicians? I was looking forward to getting back to piano (haven't played much over the past few years), but at my worst, I can't even get through one piece. Right now, I'm able to play in 5-10 minute chunks. Could playing piano be a type of PT? Or should I avoid it completely if I'm having pain?
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric

Regular Member

Date Joined Sep 2008
Total Posts : 285
   Posted 5/22/2009 5:16 AM (GMT -7)   

bookworm21 I do not know if Remicade is helping your situation, sorry.

But I do know exactly how you are feeling.  I have been having RA like symptoms and PAIN since Feb2008, so over a year now.  I have almost all my blood taken out of me for tests( or so it feels like) I have had the Rh factor test too. I have had x-rays and even an MRI.  and my doctor and rhuemy have not been able to actually give a name to my symptoms either. All my tests show inflammation, but on the days when I have appointments my joints do not co-operate and have visible swelling.  I hurt most every day.  I do not play piano, but do play the flute once in a while as a pass time.  I had it out the other day and played for a bit, and during and after I paid for it.  My choice but I put it away for now till another day where I feel okay and wont mind hurting a little after.

My doctors are still doing tests and trying to come up with a diagnosis, they are pushing that its RA but wont show us for sure yet.  So until they can confirm what they believe, I am being treated for my pain. The know I am having chronic pain,and inflammation and are just going to treat me for that for now.  I take 400mg of plaquenil, 1000 units of vitamin D, and 10mg (maybe up it to 20 soon) of amitriptyline daily.  I just started the amitriptyline and do not know how effective it is.  I do know without my plaquenil that I am in more pain.

Best of luck to you and I am sorry you have to go thru this.  But know that others know exactly how you feel. ((gentle hugs))  Have a good day.

Regular Member

Date Joined Apr 2008
Total Posts : 28
   Posted 5/22/2009 8:40 AM (GMT -7)   
I have joint pain and some swelling and had blood work and even hand x-rays. /everything came out clear, but no diagnosis. So, I have heard the same thing from many people, you can have ra or other arthritis even without blood work saying so. I dont' know true that is, but that's what I'm going with. I have osteoarthritis in my knees and degenerative in my jaw, so a chiropractor said it probalby is in the hands, and feet as well, but takes time to show up on tests.

Good luck to you, hope this helped.

Veteran Member

Date Joined Sep 2008
Total Posts : 1670
   Posted 5/22/2009 4:07 PM (GMT -7)   
Hi Bookworm, I'm not a doctor but from reading others posts, isn't it normal for people with UC to have joint pain? It can be caused by so many things not just RA. All these auto immune diiseases seem to have horrible bodily effects. I guess with UC you can't take NSAIDS? How about using the gel? Heat helps me, could you try to heat up your hands before you play? I'm an artist but have learnt to change my grip and grit my teeth! Any arthrits is so horrible, often it doesn't show up in your bloodwork for years, but you would think you'rd show some swelling. I guess the remicade might be covering that symptom. Sorry I can only offer deep heartfelt sympathy and welcome you to a great maoning site! Golitho

Veteran Member

Date Joined Mar 2008
Total Posts : 1766
   Posted 5/22/2009 4:54 PM (GMT -7)   
Thanks for all the responses and sympathy! I really appreciate it.
Yes, people with IBD can have joint pain, but it usually happens when the IBD is active; my joint pain started after I was in UC remission, so the rheumy doesn't think it's related to IBD. No, I can't take NSAIDs, but Tylenol and wrist braces work pretty well for me.
I have my 8th Remicade infusion today and I actually got some sharp joint pain during the infusion. The nurse said that it was a reaction, but it was only temporary and the rheumy says Remicade should be helping my joints. I'm so confused! I wish I could just put a label on this thing--it'd give me a peace of mind.

New Member

Date Joined Jun 2009
Total Posts : 7
   Posted 3/8/2010 9:55 AM (GMT -7)   
I have this exact issue on the same meds. Have you found any help since this post?
Diagnosed Jan 2009 with moderate to severe UC.
Lialda, prednisone, imuran, remicade
Supplements: Multivitamin, calcium, flaxseed oil, fish oil, b12 and L-Glutamine.

Christian B
New Member

Date Joined Mar 2010
Total Posts : 6
   Posted 3/8/2010 11:53 PM (GMT -7)   
Hi, I noticed that TayIsa said you're taking 1000 Units vitamin D, was this suggested by a doctor, if so, did they tell you what it is supposed to do? I'm taking it also, but I have only read real general descriptions of what it is for.

Raysare#1, I see you are taking L-Glutamine, what does that do, do you feel any help from it, what form do you take it in, and is it expensive, I had heard about that being some kind of amino acid that is for organs/brain??

Sorry to ask these questions on your post bookworm, I'm sorry for the pain you are having. I see fish oil is something you are taking, is this for inflammation, did you notice anything after taking it? I started taking a whole bunch of stuff like that, I sorta wish I had started them one at a time to see results better, but I needed a serious jump start on my sickness and inflammation.

Regular Member

Date Joined Sep 2008
Total Posts : 285
   Posted 3/9/2010 8:11 AM (GMT -7)   
I was told Vitamin D is good for strengthening bones.  Like when babies are little and they tell you to give them the drops for vitamin D to help their bones grow strong and healthy.  All people are supposed to have so much vitamin D a day.  You get vitamin D from sunlight, and for most that is enough.  But for me I guess my levels when tested were low.  I am not a doctor but I think Vitamin D is also good for Joints to help stop them from breaking down like they do in arthritis patients?? Sorry Im not much help but this is all I know.
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