One life-changing day in July 1992 I was in too much pain and fatigue to get out of bed. The days turned into weeks, then months, then years. A good day was when I could sit up and read. Some days I would will myself to get dressed–then go back to bed.
Medical science says my symptoms were (and are) characteristic of fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS), stress-related disorders that frequently occur together. “Co-morbid” is the medical term for this package deal.
FM and CFS are marked by pain, fatigue, sleep problems, memory lapses, brain fog, numbness and tingling, depression and anxiety. What most notably may set FM apart is pain in nine pairs of points in the body, for eighteen points of pain.
In 1990 the American College of Rheumatology identified the eighteen points of pain as nine paired points: two in the front and back of the neck, two in the hips, one in the elbows, one in the knees, one in the chest, and two in the back and shoulder areas. If you experience tenderness and soreness in those areas (eighteen points of pain in all) you’re a candidate for a diagnosis of FM.
Conditions that last indefinitely, that never go away, are termed “chronic” as opposed to “acute.” Whether a medical professional diagnoses my chronic condition as FM or something else, the fact is that it forces me to live with nagging pain and disabling fatigue.
My fatigue so great if affects vision, speech, and memory. It’s not about good days, it’s about good hours and minutes. At my best I’m no more tired than if I was out all night at a rock concert, and I stagger through the day. At my worst I lay in bed, dead to the world, in a semi-vegetative state.
Think about the worst fatigue you’ve ever felt. Maybe you went on a ten-mile mountain hike when you normally don’t walk anywhere. Maybe you insisted on trying everything in an advanced aerobics class even though you’d never been to a gym before. Maybe you ran a marathon and gave out. Now imagine that crushing level of fatigue is your “normal” state, no matter what.
I’ve adjusted to working with my fatigue instead of against it. My bad semi-vegetative days tend to happen on Sunday. I’ve trained my body to give me six days of semi-function and one day of shut-down.
Even my mother has had to learn that I’m simply not available on weekends. That’s my personal time for rest. I do a few household chores on Saturday but nothing that taxes my head, because my brain fog can’t handle anything complicated. I often stay in bed all day Sunday, allowing my brain fog to take its course.
On weekdays, I now typically get up at eight or nine in the morning and go to bed at eight or nine at night. That means I get about twelve hours of life while others get sixteen. I take a morning and afternoon nap. I’ve curtailed my activities—no late nights, no early mornings. When I say, “I’m not up for that,” I mean it.
So please don’t say about my fatigue, “I’m tired all the time, too.”
Besides the fatigue and brain fog, there are my nine paired points of FM pain, eighteen points of pain in all. For so many years I’ve endured the throbbing in my neck, my arms, my legs—I don’t remember what it was like to be pain-free. I walk around in pain, sit in pain, sleep in pain. For pain management over many years I’ve consumed thousands of pain pills: aspirin, ibuprofen, and naproxen sodium (not all at the same time, of course) with occasional forays into homeopathic and herbal concoctions. I’ve frequently sought out physical therapy as well, including chiropractic, massage, backrubs, and osteopathy.
I meet the Social Security Administration standards for disabled. Prying fibromyalgia disability payments out of the SSA took nine years, several lawyers, several doctors, and countless pieces of paper. It all depended on how much I’d paid in and when I filed. That’s another article.
In 1992 I worked hard, the way most people do: eight-hour days, forty-hour weeks. Now I do freelance writing when my health permits. It supplements my disability checks. My medical expenses are handled by Medicare and Medi-Cal. (I reside in California.) I get enough to pay my rent, buy groceries, and keep my car running. Everything else just has to wait until my pain and fatigue allow it.