Preparing for an appointment with my rheumatologist on 5/23 led me to the understanding that the affliction I’ve been thinking of as osteoarthritis is indeed not that: joint tissue is not being degraded and eroded, as was the case with my right hip joint in 2012 (when, after the excruciating pain of bone grinding on bone, I got a titanium replacement joint). So, my doctors have been careful to say that I have joint pain but not to attribute the pain to osteoarthritis (though I doubtless have some degree of that).
In osteoarthritis, some of the joint is lost, so there will be chronic pain, in the same spots, though worse on some days and better on others. (Very low air pressure will trigger intense pain, and I certainly get that, omigod do I get that, all over my body.) But my pain is fugitive, moving from one joint to another, often over minutes, or an hour or two. And there are a hell of a lot of joints in the body — in the fingers and toes, wrists and ankles, knees and elbows, hips, and shoulders. (My bunions — hallux vagus is a swelling of the first joint of the big toe — often provide the first notice of a drop in air pressure, through their agonized throbbing.)
In addition, the pain is often extravagant. There were, for example, three nights when I awoke screaming in pain in my left ankle; the heel of my left foot was on fucking fire (but not hot to the touch). The fire subsided in a little while, but that foot was so tender all morning that I could barely walk.
My epiphany of the morning of 5/23 was that the affliction I’ve been think of as osteoarthritis is indeed not that (joint tissue is not being degraded) but — oh dear — an autoimmune affliction that mimics osteoarthritis. Dr. Fischer found this fascinating, but outside his sphere of knowledge, since rheumatologists treat inflammations, and what I had (right then in my poor right hand, still not recovered and full of pain) was clearly not an inflammation. Then he was openly admiring at all of my ingenuity in self-treatment and its success, without any note of supercilious criticism (as on our previous encounter). He doesn’t want to reduce the prednisone any further, despite my family doctor’s noises about that. He told me that I looked wonderful, keep doing what I was doing because it was obviously working, and he sympathized about the contractions of my life made necessary by all of the treatments. Come back and see him again in three months (appointment made).
I used the PAMF bathrooms twice during this visit, just before seeing Dr. Fischer and just after; I really do have to whizz every 20-25 minutes.
It’s not clear what to do at this point. Rheumatologists often serve as the specialists responsible for the musculoskeletal system and its afflictions, whether inflammatory or not. But Dr. Fischer had no insight into an autoimmune condition mimicking osteoarthritis, and I’ve found no references to a condition like the one I have. So I’ll just continue muddling through.
June 2, 2023 at 1:53 am |
Maybe I should call it osteoarthritism.
June 2, 2023 at 2:35 am |
Arnold–Congratulations on your self-diagnostic abilities. That gift of yours filled our first conversation. Visiting a born-in-Vermont Friend, Brian Lloyd, in San Jose, we’d come up a bit early for a Sacred Harp sing–you hosted–and contra dance. You’d just outwitted some flesh-eating bacteria that had taken up residence in your shoulder, contracted, you guessed, from “either a paper cut or swimming” in the Gulf(?) You recounted an impressive tale of sleuthing and medical genius that, apparently, made quite an impression on me since I, uncharacteristically, recall it well some twenty years later right down to the alternate diagnosis of, I believe, Bubonic Plague, and the pair of competitively-inclined surgeons who took the opportunity to show off their fine-cutting prowess, shaving slices of dead meat away from live.
I wonder if you’ve given thought to whether your body is now troubled by mold? I’ve not got your gift for parsing these things out, but since becoming aware of Multiple Chemical Sensitivities, I’ve also recalled that, while running the St. Albans City Housing Authority, my employers relocated me for a few weeks because of a mold infestation in the offices. Perhaps it’s coincidental, but my MCS, reflux, and cardio-vascular problems, and an asthma-like condition followed soon after that exposure Listening to, some folks in a toxic mold Facebook group who tend to see mold as the source of most physical ills, I’ve just gotten hip to the possibility of this all being mold-induced. Testing is next.
June 2, 2023 at 3:08 am |
Wow, that would have been in 2004 or 2005 (since the necrotizing fasciitis was in the fall of 2003)! Now, the thing about the mold hypothesis is that it’s an idea about the original trigger for the condition, but the condition then persists, and has a life of its own, quite independent of that trigger, which is (typically) no longer part of your environment. As a result, gaining knowledge of the trigger is of no help in treating the condition you have now.
June 2, 2023 at 9:45 am |
I don’t know of a case anything like yours, but a friend has psoriatic arthritis, which I believe is an auto-immune attack on the joints. Hers is destructive, though. She’s frustrated because she started having symptoms while she was fairly young, but it took so long to diagnose it, some of her joints were irreparably damaged before she got treatment.
June 2, 2023 at 11:14 am |
I manage to have a form of psoriasis plus the osteoartritism, but clearly do not have psoriatic arthritis. Something to be thankful for.
June 2, 2023 at 10:53 am |
My joint pain was reduced from unable to walk 10 feet to bearable for long walks by using Tumeric and Boswella. I take it in the morning and evening. Such a huge difference…