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I feel like I am the only person with joint pain. I am 47 and have been diagnosed with Crohn's for 10 years now. I have complained about the joint pain since the beginning. I have an excellent  GI MD but he doesn't seem to know what to do about my joint pain. I am on Remicaide and my GI symptoms are really good. But the joint pain just continues. I still work full time as a Nurse Practitioner and try to go on at least 1 mission trip a summer. But every year between  the fatigue and the joint pain I want to do less and less. I don't play golf as much, I never go to the movies, my poor house needs more attention. My husband is very understanding. But I don't want to give in to this disease. I want to be fun again. When I get home I just want to sit or lay down.

Even my rheumatologist  acts like I shouldn't feel this way but I do.

Anyone else? How do you cope?

Arlene

 Reply posted for Arlene.

I hear you about this.  I have UC and right now the GI says my colon looks great with only mild erthyma on biopsy from the colonoscopy-but the joint pain and fatigue have taken away my quality of life.  I'm half finished with my Nurse Practitioner program!, and by the time I've worked, done clinicals, or been in school all day-I pretty much have little to no energy to be a mom, wife, or housekeeper-just like what you're saying.  I go tomorrow to talk to my GI doc. about remicaid-but again, like you, the docs want to act like UC shouldn't be causing the joint pain or fatigue, but tomorrow I'm going to hopefully get somewhere's even if it means telling him to read up on the most recent research-because it is clearly documented that these symptoms amongst a few others (skin itching, eye problems, osteoporosis-which I also have all of these) are linked to UC and chron's.  Anyway, you're definately not alone in this, and I feel that your doc. needs to be more active about treating you, my GI doc said the meds like mesasalamines only work in the gut, in order to control extraintestinal symptoms, like joint pain, you need steroids or some type of immune suppressor to stop the body from attacking joints, eyes, etc.  Good luck and I hope a complete remission is in your near future!

 Reply posted for Arlene.

I had the total colectomy surgery last April. I then had it reversed in July. I was on remicade before I had the surgery.

I had joint pain from about April-August. It went away for some reason i don't know.

When i was in the hospital, I was on dillotted (have no idea how to spell that) and while it took away all my pain from the surgery itself, it did not do ANYTHING for my joint pain. They could not give me enough dillotted to control my joint pain. But I found that by taking just one or two Aleve, my pain would go away.

Talk to your doctor about this option. Aleve contains Ibuprofen, which I know your doctor probably told you not to take. But it may be worth it in this case if it works, and it's a lot cheaper than other meds.

 Reply posted for Arlene.

I was dx'ed with Crohn's in 2005.

I too get tremendous joint pain in between Remicade infusions.  My next infusion is tomorrow and I'm in severe pain.  I'm not taking anything for the pain because OTC medicines don't work and I don't want to be dopped up on Vicadin (one thing that does work for me).  Once I have my infusion, the pain goes away.  I don't usually get intestional symptoms, only the joint pain and fatigue. 

You might want to try and increase the dose and/or frequency.  I'm at the max dose of 10 and I go every 5 weeks.

Come January, I'm going to be switching to Humira because of insurance issues, I just hope it works.

I hope you find what works for you.  Keep us posted.

 Reply posted for Arlene.

Joint pain has been a major issue with me.  I'm 57 and in the last year and a half i'm barley able to get in and out of the car.  I'm allergic to Remicade and flagyl so neither are helpful.  Done Humeria, Embrel, Imuran and major steroid.  The steroids have made my skin so thin it bleeds and bruses constantly.  I too have tried all different pain pill but have not been able to change my quality of life.  On Cimzia now but this too has stopped working as I am writing this from the hospital.  But I'm not getting beatin down, I just ordered some new golf club....I'm fighting back.  Thanks for all the insight.

 Reply posted for Arlene.

Have you tried remicade?   It seems to help my aches and stiffness.  The trouble is that remicade is forever.  I take it every six weeks.  I sometimes walk in the hospital stiff and achey and walk out normally.  Good luck!

 Reply posted for msalanui.

My daughter (19) has terrible back pain. It is all from the crohns. She has had many tests and tried different things. The only thing that helps is Tramadol (Ultram) pain medication and she sleeps with a heating pad. She has over used the heating pad so much that the skin on her back is discolored permanently but is the only way she can sleep.

 Reply posted for Arlene.

I am 48 and was diagnosed with Crohn's nearly 30 years ago.  I have been in remission for quite a few years now, but lately I have been noticing a lot fatigue and mild pain in my joints.  Some days it feels like my bones are made of lead.  My most recent blood tests have shown an elevated CRP.  I am beginning to suspect I have a low-grade flare up in progress.

My situation is complicated by the fact that I have numerous other issues that I am dealing with that can have similar symptoms.  It is a real trick to not only identify the actual sypmtom, but to figure out exactly what is causing it.

If I come up with a good expanation for what it going on with me, I will post it here.  I hope you will do the same.

 Reply posted for msalanui.

My joint pain started long before the Remicaide, however it has been getting worse. Thank you for the insight.

 Reply posted for Arlene.

I also have the joint pain my GI Dr said it could be caused by the Remicade and if you look at side effects it is a side effect of the medicine.The Dr finally put me on pain meds cause it hurt so bad I dont take it to much cause its not good for the Gi tract.I really never got a definte answer either