A few times in the last few weeks I had to sleep on ice packs for sacroiliac inflammation — that’s inflammation of the joints where the spine and pelvis meet. This kind of inflammation is a known complication of Crohn’s, and, in my case, was one of the first symptoms I had in the years before I was diagnosed. I had a lot of X-rays and a radioactive dye test in the early 2000s to investigate the reasons for the pain because it was so bad that I could barely walk. I also had an MRI a few years ago to track the baseline inflammation and damage, which is apparently still there even when I feel fine. I was mostly free of this pain for the past 12 years. I’m not sure why it’s coming back, or why it took almost a week after my last Remicade infusion for it to go away this time.
One weird thing about this pain, at least these days, is that it almost always happens only at night. The ice packs are the best way for me to dull it enough for me to go back to sleep when the inflammation wakes me up. Most people would be able to take anti-inflammatory medicines, such as Aspirin, Naproxen, or the like, to settle things down, but I’m allergic to that whole class of drugs (non-steroidal anti-inflammatories, known as NSAIDs). The only painkillers I can use are Tylenol — which is not strong enough to help — and narcotics. The only anti-inflammatories I can take are steroids. Both narcotics and steroids are powerful and have lots of side effects, so they’re not real options for me unless things get really, really bad.
I had my annual physical yesterday and mentioned this issue to my doctor. She wondered whether I am still allergic to NSAIDs because the last time I had them was more than 25 years ago. She referred me to a specialty clinic so that I will be able to try some of the drugs under controlled conditions and see whether they still give me hives and restricted breathing or whether I outgrew this allergy.
I have done these oral challenges before for food allergies, so I’m familiar with the process. One of my friends called it my “personal fear factor” because it involves eating something that has caused a bad reaction in the past. In the case of food allergies, I found out that I’m no longer allergic to two of the foods I tried, at least when they’re cooked (yeah!) but that I’m still allergic to three others. It was worth all those repeat visits to be able to expand my diet. If it turns out that I’m not allergic to even a few NSAIDs, it would make my life a lot easier down the line if I get bad arthritis again.