A little bit of venting this Monday morning. If you are not into health-related posts or venting in general, you probably can skip this post.
About twenty years ago, I went to a general practitioner with an earnest complaint about some generalized pain I was experiencing that I couldn’t explain. It was sometimes in my joints, and sometimes muscular. Sometimes both. I asked what it might be, acknowledging that it might have some of the source being in arthritis. I also suggested that because my mother had been diagnosed with fibromyalgia, that it might be a factor in my increasing frequency of inexplicable pain.
She laughed out loud at my suggestion. And I mean, nothing held back at all.
“Men do not, I repeat, DO NOT get fibromyalgia,” she informed me between wiping away the tears of amusement.
She was wrong in so many ways. Because then she told me I was too young to have rheumatoid arthritis (RA). Except her preliminary, non-specific test suggested that I might have it (there’s this thing called “juvenile rheumatoid arthritis” that she apparently had never heard of, and I was in my 30s, so I quite easily could have had it). She referred me to a rheumatologist, who did give me a more specific test (non-conclusive) and decided I was positive, ergo I had RA.
To her credit, what little I will grant her, she at least did bloodwork. The doctor before her diagnosed me with being overweight and refused to consider any other possibilities.
The short version of what follows is that I took multiple drugs that did nothing to combat my perceived pain for over a decade, but did a number on my organs. Toxic stuff, y’know. The cure might be worse than the disease. And refused to run that more specific blood test when I told him that I had been sober for over a year and wondered if the meds were not working because the inflammation markers were from my alcoholism. “Stay the course” was what he would say every time I would mention the lack of pain relief.
Well, finally those drugs damaged my liver enough that a different rheumatologist gave me steroids to give my liver a break. Which apparently pushed me from being borderline diabetic (poor eating and high alcohol consumption partly to blame) to full-on diabetic. My body has never gone back since. Type-two diabetes is liver-adjacent in many ways, just to point something out. A fatty (alcoholic) liver that is under duress from toxic meds has a harder time processing glucose/glycogen conversion.
I gave up on RA drugs because they are immunosuppressants during covid. My pain neither increased significantly, nor did it go away.
I was tested by a practitioner who wanted to get to the bottom of my pain (but his clinic closed because investors bailed on the startup). He reran the standard tests and came up… negative. On all counts.
I’ve been off RA meds for 4 years. In a recent clinical visit to a new practitioner, she decided to run it again (her predecessor at the clinic had also run it two years ago). Negative and still in chronic pain.
Her tentative diagnosis this morning after reviewing my bloodwork and based on her exam? Fibromyalgia with complications from osteoarthritis and type 2 diabetes…
I couldn’t come up with a better punchline if I tried.
I know some of you folks suffer from chronic pain. I have some good ideas of things that work on a temporary basis for mitigating my pain, and I have a good sense of what I might do — but I am curious how other (with arthritis and/or fibro, especially) handle pain management to see if I can learn new techniques. Tell me below if you have your own tips for these or other chronic ailments that might apply.
Or, have you ever had such a ridiculous journey only to end up where you thought you were when you started? Even though, you shouted from the passenger seat, that you thought the car was going in the wrong direction the whole time? [“Just shush, you! I’m a PROFESSIONAL™!” and yes, I was pointedly told that several times on this journey when I questioned their judgments.]
Have you ever had someone be so absolutely wrong about something important like your health? Rant below.
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