Joint pain and UC

Same here as Sherry and Babe in the Woods. I KNOW that pain well!

  My rheumy treated me for arthritis and fibromyalgia for years despite my telling him that I knew there was a correlation to my inflammatory bowel issues.  Now--after the UC diagnosis--I realize that the rheumy's prescribed meds for fibro and RA just made my UC worse! 

 I don't know about others, but for sure, my joint pains (including elbows, shoulders, wrist as well as hips and lower back) are a direct result of inflammation from the UC. IMO, the alternating D / C that accompanies my UC causes toxins to build up in my joints. But that's just my theory after YEARS of docs who don't listen and are too quick to call it this or that and write scripts instead of getting to the bottom of things. Sorry, I'll get off my soapbox now.  I feel your pain FAITHMAC! Some rheummies are good. . . keep searching for one that will listen!

ANA levels? Going to ask my GP. I need to know if my JP is from UC or Humira.Or both!

I had my ANA checked numerous times. I had one elevated but then the rest came out good after that -I'm not quite sure what that meant. It's just a simple blood test.

ANA levels are only one indicator of a possible autoimmune illness related to your joints. It's not really a diagnosis of anything (although it is often called the lupus test). You need to see a rheumatologist, not your GP. And if you have arthritic changes in your sacroiliac joints I don't have a lot of confidence that you're going to get anywhere in terms of solving a lower back problem. The SI joint is just too involved in lower back pain to untangle all the issues IMO. Are you doing the right stretches and strengthening work to support your SI?

I know it's hard Faithmac. I myself spent several years trying to untangle a hamstring tear & SI problem. Between my GI, my rheumatologist and my orthopedist, I probably had 4 different imaging studies done on my pelvis. My rheumy did the last - an MRI with contrast of the SI and lower spine. No inflammation was found on any of them, except at the hamstring insertion point where I know I had a muscle tear.

What was found was arthritic changes to L5/S1 (NOT THE SI!!!!). This was found on an abdominal CT done by my GI in January '12. It's a pretty common problem for all adults. I don't think it's necessarily related to my IBD. I never have pain that's centrally located.  But I do know that my right SI hurts more when I have other joints hurting, and it feels better when I have less pain elsewhere. Draw your own conclusions.

The stretching and strength work is really necessary. Also really boring and not very rewarding. Having a regular yoga class helps a LOT. I haven't managed to get to mine in the past 6 months and it shows.

If you're not having joint pain elsewhere (hands/feet/shoulders/knees) then I would not worry too much about reactions to the Humira or having peripheral arthritis due to IBD (your lower back is not a peripheral joint anyway).

One of the best things I did was have an ergonomic study done at my work. I got a better chair, and I got a better table height for my computer. You have a totally different situation!

Have you ever tried wearing an SI belt? Maybe that would help support you while you're doing massages. I think core strength is key for you especially since you are using your arms and legs so much in your work.

glad to be the voice of reason. One day you can send me the same info, LOL!

Hey activeUCer!
Hope the Humira helps with your arthritis and UC . Bought Samee
To help with the joint pain an anxiety. Kinda took the edge off. I've made myself crazy trying to figure out why I have this low back ,SI joint pain. Reading all the side effects from Humira had me worried. Ive had this pain before Humira. Now I have more of it.
I hate this DZ:(
Faith

kazbern said...
One of the best things I did was have an ergonomic study done at my work. I got a better chair, and I got a better table height for my computer. You have a totally different situation!

Have you ever tried wearing an SI belt? Maybe that would help support you while you're doing massages. I think core strength is key for you especially since you are using your arms and legs so much in your work.

It's very true. "Keynomics" really need to be offered for free online. When I started my data entry job, we were sitting at a computer typing for 8 hours straight, so it was important to go through proper training of keynomics. Our seat position was adjusted so that our elbows met with the tip of the table height and we didn't lean forward or back. Foot rest too! :) If only I knew this when I was 12 thru 15 years old, I probably wouldn't have such issues.

I too have severe joint pain from time to time.

UC diagnosis was last fall, joint pain started this past summer and after starting Zyflamend (by New Chapter), I was able to minimize it. I'm telling you, I literally could not walk for 2 whole days at one point. My knee caps made me stay in a crouched position in lots of pain. I got blood work done, and all of my antinuclear activity was negative, meaning if I went to a rhuemy doctor or had signs of arthritis, the results would indicate so, and they didn't at all. This is when my doctor recommended going gluten free 100%. Even small amounts trigger that inflammatory response.

The weird thing is, I'll wake up some days in pain, but as I go through the day, its gone! =/ Weird thought, but makes me wonder if it has something to do with my sleeping patterns? Not enough oxygen getting through my body? Ugh

I have 8 inches of colon left between surgeries. I was too sick and on too many drugs for them to do the standard jpouch surgery so they wanted to get most of the colon out so I could go off of drugs. The "remaining UC" refers to UC in that 8 inches of colon. I haven't been scoped, but I still get blood and mucous coming out.

I thought I was done with drugs too :(. I'm hoping that I only need to be on Humira until the rest of my colon comes out (six months and minus 50 pounds). Alot of people report that their arthritis goes away when their colon is gone. Others get it after their colon is gone :(. Once again it's the same old "it depends on the individual." I have taken a bit of an emotional hit recently. I so thought I was done with the UC roller coaster!!! I had surgery and I was supposed to be feeling better! And I do feel and look better, it's just the arthritis that has now shut down my life. I'm very very hopeful that the Humira will help.

I did go to the rheumatologist for confirmation diagnosis. Based on my bloodwork and symptoms, he does think it is related to the IBD. I only had one elevated marker...the one related to UC.

They both said that getting the UC under control would help with the arthritis. That's the best advice I have (which doesn't really help because it's not like you aren't trying!!). I also take Celebrex (which is an NSAID unfortnately...but in my case it helps more than hurts). I've also been prescribed some Vicodin for when the pain gets really bad. But it doesn't get rid of the source of the problem (inflammation), it only hides the pain.

Somebody in another thread recommended Inflaguard. It looks like a bunch of combined supplements that are supposed to help with inflammation.

Best of luck to you too!

My Humira training pen actually "talked" to me (probably just an MP3 recording). It kind of shocked me and was funny at the same time. Both the nurse who showed me how to do my shots and the doctors I know were like "no wonder Humira is so expensive if they are sending you these demo's!"