With the start of 2020 and a new decade that can’t be worse than the last 3 years globally, and with being moved into my new “forever” home with my own library to curl up in and pretend the world doesn’t actually exist, I’m trying to get back into the swing of this again. I have a stack of new articles to read, most about pain rating systems or pain classification/characterization. I am wondering (again) why doctors even ask us to rate pain? I mean pain is what characterizes our condition. It’s there! Asking us to rate it tells them nothing, at least not as far as I can tell. There must be a more meaningful measure for how a person with fibro is doing overall. Anyway, before I start that, I’m looking at an article from Atzeni et al, “One Year in Review: Fibromyalgia.” I know, it sounds riveting, doesn’t it? It actually is.
The article is divided up by 1) etiology – why does fibro happen to people? 2) diagnosis – how can physicians diagnose it? 3) treatment. I’m going to look at etiology first.
When I quit working on this project last year (or the year before?), I was looking at the idea of something in the skin as a cause for fibro. I didn’t get my head around it, but as I was sorting through articles to study, I set aside a pile having to do with skin. As it turns out, in 2019, there was not a lot of work done on the cause for fibro, but there were studies done dealing with “small fiber neuropathies.” I don’t have a clear idea of what that means, but it’s essentially pain, mostly in the feet and hands. Researchers went a little further last year, however, and looked at large fiber neuropathies too. The reason the results catches my eye is that 90% of their test subjects with “only” fibromyalgia (no other diseases like diabetes, etc) tested positive to “demyelinating and/or axonal sensory-motor polyneuropathy,” which is a fairly fancy way of saying messed up nerve cells, nerve fibers, and nerve coverings. Messed up nerves. That may seem like a duh moment, BUT it’s rare, in all the readings that I’ve done to have such a high percentage of subjects with fibro agreeing on anything.
Importantly the non-fibro control group all tested negative, except for those who had carpal tunnel syndrome.
The testing for this was done with a skin ankle biopsy, so I’m glad I bundled up the articles on the skin that I did. I’ll definitely have to look closer. In short, despite all the need-more-testing-protests that you always read, this is solidly a potential thing. But what thing, exactly? There isn’t really a stated cause for demyelinating and/or axonal sensory-motor polyneuropathy either.
However, if a physician can do a biopsy to determine whether or not a person has fibromyalgia, there are a couple things that could benefit the patient. First, the patient can get a solid, definitive diagnosis. It could slow down patients who hop from doctor to doctor hoping for an answer. Second, physicians could regard people with fibromyalgia as a patient with a solid, definitive diagnosis. When there’s a solid definitive diagnosis, treatments follow much more rapidly and readily and with less resistance. Fibro patients may not feel like they’re flapping in the wind so much. Maybe we won’t sense the reluctance to talk with us about what’s happening to our bodies. Doctors may feel less like they’re making guesses. To me all that’s positive. It doesn’t change anything in the long run, at least for now, but it’s positive.