Crohn's remission with external symptoms?

My digestive symptoms seem under good control, but for the past couple of months, I've had achy muscles in my arms and legs. Some of the pain seems related to lower back/ sciatic issues, but then I also get pain on the side of my knees, and just all over achiness, kind of like the flu, but I'm not sick otherwise. It is definitely worse at night when I'm tired for some reason. My internal med doc is a very nice guy, but doesn't seem to know a lot about Crohn's. My GI is great, but I'm not scheduled to see him until January, and I think since my gut seems fine, he may not be able to help me with this. Should I be requesting bloodwork? Any ideas of vitamins, food supplements that might help? Maybe this isn't even related to my Crohn's. Any suggestions would be appreciated.

I think that it is related. There is a common sacroileal problem that affects a percentage of people with Crohn's and a bunch of aches and pains that seem to come with CD. I recently was reading an article about extraintestinal manifestations of Crohn's. The author was interested in a particular kind of joint swelling that comes with CD and mentioned several other painful joint problems that arise from CD like reactive arthritis, psoriatic arthritis, sacroileitis, inflammatory back pain and the one he was interested in which he did not give a name to, but others have referred to as enthesitis. It is an inflammation of the ligaments and tendons around a joint and is characterized by swelling. Enthesitis will eventually go away doing no permanent damage, but it can last from a few days up to10 weeks for the milder sort and for multi-joint swelling, it can last up to two years. He seemed to think that the milder enthesitis came up during a flare but the longer lasting kind went on regardless of whether there was an accompanying flare or not.

I also think that there is a tendency for tendinitis to go with CD, but that is harder to find confirmation for.

Ok sounds to me like you might also have Fibromyalgia. I know many of us with CD do. I started taking 2000 units of Vitamin D and it has helped my joint pain SOOOO much. I too am in remission, my guts have been doing so well, and now my joints are feeling better too since I added the Vit D. I have been taking good probiotics for awhile, and they didn't help my joint pain at all, just the guts. Give the vitamin D a shot and see if you get the relief I did. I have posted a link about Vitamin D and pain for you. Good luck!

http://pain-topics.org/pdf/vitamind-brochure.pdf

I'm taking 2000IU of D3 daily, but my rheumatologist checks my levels periodically. Despite this daily dose for over a year, my levels are not as high as he'd like to see. Nevertheless, I believe it helps me. I know of no problems vit D causes in Crohn's patients. (I was diagnosed in 1975.)

I too have fibromyalgia and what my rheumatologist calls "Crohn's arthritis." Whereas gut symptoms used to be my first signal Crohn's was rearing its head, it's now arthritic symptoms in nearly every joint. When it gets bad enough, they generally have to increase Prednisone, as (in me) it's a sure sign my guts will flare next. Apparently this is a non-degenerative form of arthritis. It doesn't bother me too much when my Crohn's is under control.

Post Edited (twokatmew) : 11/8/2009 11:26:36 AM (GMT-7)

Thanks everyone. I have been avoiding going to the doctor, but I think I need to deal with this! I'll ask about the Vitamin D blood levels

I have all of your symptoms. Despite monthly B12 injections, I'm almost unbelievably exhausted all the time. Some people on this forum suggested that I start taking Vitamin D. That sort of shamed me into taking a multivitamin (which I hadn't been taking) and some extra calcium and D3. These seem to have helped a bit with the fatigue. Although I'm still a little tired and weak, I don't feel as if I'm slogging through quicksand all day or looking at the world through heavy gauze.

Hey gumby...I am similar to you. My gut is doing very well lately (I shouldn't say that out loud!). My problems have been the muscular, joint and anemia issues. On top of the Vit D that was recommended, I also recommend you check into Vit K and if you are anemic.
When I am anemic, I have a hard time sucking in enough air. I find that is when my muscles fight back with me, then my joints are "tired". I belive that is oxygen deprivation to the muscles. The potassium just helps me with the muscle cramping.
I have also started "babying" my joints. I bought inexpensive support wraps ($4 a piece) to wrap my wrists, knees and ankles. The warmth and extra support have helped more than I can explain in words.

There are many things I love about this healing well community, but at the top of my list, is the ability to feel validated with my symtpoms. Sometimes I questions my own sanity, because my symptoms seem so illogical (like having my left hand numb while my right knee hurts!). I feel like I'm nuts, and then I come here, and realize I'm not alone. I'm taking this post with me to my doctor. I won't show it to him unless it feels like he doesn't believe me, but it will be like taking my friends along for emotional support! Thanks for all of the advice!!!