… d’Nile. You know–denial. I’m thrashing in the reeds along denial’s shallow edge, vigorously shaking my head at my recent fibromyalgia diagnosis.
Because this constant, aggravating pain I have in my hands isn’t fibro, it’s RA. The persistent dull ache in both my hips is a symptom of bursitis. Not FMS. I don’t have pain “all over,” just in those two specific spots. So here I am, sitting with my arms crossed tight in the bullrushes. I deny fibromyalgia. Its facts are the round holes to my square pegs.
I don’t have fibromyalgia. That’s my solid opinion after a couple of weeks ofmulling over Dr. McA’s surprising words over following my appointment with him. “You have fibromyalgia,” he said to me, causing instant jaw-drop.
No, I don’t. Sure, when he tested the fibro tender points on my body, his pressing fingers caused me to wince a couple of times. One of the points was my knees. Both of them have flared intensely but very briefly several times over the last couple of months. Tender? Sure. But I’m confident that pain was from rheumatoid arthritis. It felt like RA pain, centered deep in the joint, throbbing angrily at rest and shrieking if I bent my knee or put my weight on it.
Your garden-variety rheuma-dragon pain. His teeth were in my knee.
I know Dr. McA simply whipped the fibromyalgia diagnosis out of his hat because my last several blood test results indicate that my RA is in clinical remission. My pain doesn’t fit the test results, so it has to be from fibro, the syndrome that consists entirely of pain that can’t be clinically explained. I’m guessing that he was grasping at straws and found one.
But those of us who actually live with the effects of RA in our bodies know that “remission” is one of those weaselly words that can mean different things at different times and among different people. You can be in “remission” but still hurt like a you-know-what. Or not. I’ve experienced “remission.” It lasted about six years and during it, I was almost entirely pain-and-other-symptoms-free.
So this time, my blood tests might be shouting “remission” but my rheuma-dragon hasn’t got the message. Nor has the bursitis-wyrme who’s chewing on my hip bursae, keeping them constantly inflamed and aching. I don’t know why they haven’t stopped aggravating and disabling me. Maybe they’re deaf.
Anyway. I don’t have fibromyalgia. And I’ve had a couple of fairly decent weeks since writing the two previous posts. Except for a few harsh flares, my hands and hips have kept the volume turned nicely down–enforced by pain meds, of course. When I stop them the volume ratchets up quickly. I can live with that. I’ve been sleeping very much better since my nortriptyline prescription was finally and copiously refilled.
And I’m going to ask Dr. McA to strike his fibro diagnosis from my medical records. Why? First, because it’s in error. Second, because until medical science can take the word “syndrome” off the name, a diagnosis of “fibromyalgia syndrome” implies that the sufferer is either a whiny hypochondriac or a malingering drug-seeker of low character. I believe that the vast majority of those diagnosed with fibro are neither; that their pain is real and devastating. But a lot of people both inside and outside the medical profession believe otherwise. And that’s why I want this mis-diagnosis struck from my records.
It’s a negative I simply don’t need.