My Bones Hurt

Hi, I've had this pain also for a few months now, off and on but I feel it almost everyday. My arms, legs and sacrum, the small of your back, hurt. I've been mentioning this to my GI for awhile bow and he hasn't sais much except that it's caused by inflammation!

Would like to know if you get any answers.

Heidi

For proper diagnosis, you need to be referred to a rheumatologist. There are a couple of types of arthritis associated with IBD. The most common is a peripheral arthritis that seems to follow the course of the disease, and usually is vastly improved by colectomy. The other is spondylitis and its related diseases. Enteropathic arthritis is the related disease associated with IBD. It has an independent course, more or less, and can start many years before IBD shows up, or many years after colectomy.

I was diagnosed with enteropathic arthritis a decade after colectomy. All my tests were negative (except for inflammation), but she diagnosed based on symptoms and history. I've been on biologics since 2006, and doing much better. Sometimes you need to see more than one rheumy, as some refuse to diagnose without radiological evidence or a positive HLA-B27 antibody (half or more of those with the enteropathic type are negative).

It can be other things too, so that is why the right specialist is needed.

Here is a link to a site which provides a lot of info on the topic. It can help you decide if the description fits you:
http://www.spondylitis.org/about/overview.aspx

Hope this helps.

Jan

Thank you so much Jan. My colectomy was 9 years ago. I've had a couple of arthritis spells (aching joints) that were temporary, but this is different. It helps so much to go to a doctor armed with information. thanks.

lovedby2 -- I will keep you posted. I will see my PC tomorrow and then I'm assuming on to a specialist.

I get that pain a lot and my rheum doctor diagnosed me with Fibromyalgia and non-specific inflammatory arthritis (that just means I am ANA positive but my Lupus and RA tests were negative). The bilateral forearm pain for me is fibro pain. The pain feel centered just below/beside my elbows and it radiates up and down with the most pain in my forearms. I can be fine one minute and the next they hurt so bad. I find massage helps as well as heat. Sometimes I just have to get up and use the muscles in them. I have some work out bands in my office that I use when it is bad. It's almost like if I distract my arms with another sensations (hot/cold/physical exercise) it helps. Besides that I take Tylenol 3 daily for my overall aches and pains. I am 9 years post colectomy/pouch failure.

Hope you get some help. Pain is miserable.

thanks Tricia. I actually can live with the pain (at least for now). I just worry about permanent damage. As long as I can tolerate the pain and I'm not doing permanent damage, I do not want to take any medicine (except Tylenol).

I am right there with you. I have pain in my knees and my legs when I'm trying to sleep at night. I have noticed that standing too long creates pain in the small of my back. Ohh what a lovely disease autoimmune disease is!!! NOT haha

Akk,
During my sleep study I was diagnosed with restless legs syndrome (RLS). It sounds like you might have it too. I have sleep apnea too. Anyway, I take medication before bed and sometimes in the late afternoons for it. I also have to take it before acupuncture and tests like MRI's. As hard as I try, I can not hold still long enough.

chal, just one more thing to think about:

The more recent studies are showing that response to drugs like Humira is better when begun earlier in the disease process, before irreversible damage occurs. They still do not know if it will prevent progression as time goes on, but you have a better chance of the drug working if you start earlier rather than later. Tylenol will do absolutely nothing to interfere with the inflammation (and too much of it can damage your liver, so be careful). If you can tolerate them, NSAIDs are a first line treatment. I was able to take them for years before I had to quit.

Spondylitis is a slow and insidious disease...

But, the first step is diagnosis.

Jan

Thanks Jan. will keep this in mind. Went to PC dr. She ordered blood test to check many things. Wants to rule some things out first.