Since you’ll probably get to hear me whining about my pain if my fibromyalgia flares up, I figured it was only fair that you had some idea what I was talking about. First, I’ll give you the facts, such as they are, about fibromyalgia. Then I’ll give you the more personal viewpoint.
Fibromyalgia is a syndrome, not a disease; it is a collection of symptoms that have no known cause and certainly no cure. The primary symptoms are: 1) widespread myofascial pain in all four quadrants of the body lasting for 3 months or more; 2) having at least 11 of 18 specific tender points; 3)fatigue/sleep disorder. Additional symptoms include chronic headaches, cognitive or memory impairment, morning stiffness, irritable bowel symptoms. So, … lots of pain and a foggy brain, no tests to diagnose it, some mildly effective treatments and lots of unbelievers (the ones who don’t have it).
I do have fibromyalgia.
So what does that mean in real life? Nothing and everything.
Interestingly, I did not finish this post in a single session. A bit of “fibro fog” was creeping in and I couldn’t seem to put my thoughts together. So I slept on it. Big mistake in the world of fibromyalgia! Woke up and thought I’d slept pretty well. Then I moved. Based on the stiffness in my upper back, shoulders and neck, you might think I had been working in the UPS warehouse all the day before. My range of motion is about 50% and I can tell a headache wants to start. I would normally take a muscle relaxant and mega-ibuprofen, then lay on the heating pad. But there’s no time for that today. I have a doctor’s appointment this morning, to which I have to drive. Driving after taking a muscle relaxant is like driving in your sleep – not a swell idea. Took aceteminiphen instead of ibuprofen because of recent gastric issues. It won’t take all the pain away but may help keep it manageable. I live in dread of a major flare up, especially with vacation 2 days away.
Today’s pain, on a scale of 0-10, is about 4. I don’t know why zero is even in the scale. The only day I can recall no pain was the day after I had major surgery – I was on a morphine pump. Surprised the heck out of the nursing staff that I was so pleasant and all, but that was the day I understood how all the rest of the world feels on an average day. Of course, it didn’t last; what a tease! These days I have, after over 40 years of “practice,” found ways to minimize the pain. But I still remember and fear the flare ups where the headache lasts 10 days or more: it’s there when you wake up, it’s there all day, it’s there when you go to sleep, day after day after day…. The medicine barely touches it. Pain levels stay in the 8-10 range. I did this a lot when I was a single parent working 60 hours a week to pay the bills. I don’t remember a lot of that time but I do remember thinking about driving into a tree – at least then they’d give me some real pain medicine. I guess it wasn’t in God’s plan. Instead, he sent me a new husband to save me by taking care of me. There’ll be a lot more on him another day.
Fibromyalgia is a pain (pun intended!) because it takes away things you want to do. I loved gardening and yard work. Can’t do it now unless I want a flare up. I loved embroidery and needlework. Flare up potential. Even reading for any length of time can be a problem. I keep trying new things and new interests because I’m determined to find the ones that cause me fewer problems and I refuse to sit around feeling sorry for myself. I think I’m grateful it was finally diagnosed – at least I don’t have a bunch of people (doctors, family, friends, strangers) thinking it’s “all in my head” anymore.
Enough of that. I’ve got to go to the doctor.