Living with Fibromyalgia: The Flu that Never Ends

It started shortly after my daughter was born. I'd ruptured a disk in my spine during my pregnancy with her, which resulted ultimately in surgery. The operation was a success in that it completely eradicated the painful sciatica I'd coped with for 12 long, excruciating months. But about a week after my first post-operative checkup with the neurosurgeon, I woke one morning to find myself incapable of moving. Sure, the muscles worked - "Move, arm," I'd say to my arm. Arm moved, but the resulting ache reverberated right down to the core of my being. Exhausted, I rolled over in bed and nudged my husband. "I have the flu," I moaned.

Except that later that morning, after a nap with a warmed-up rice bag and a few Tylenol, I woke feeling - if not fine, then much, much better. I was puzzled; the flu simply doesn't go away that quickly. But with a four month old infant, I wasn't about to look a gift horse in the mouth.

Of course, it happened again. The next time, I was in the grocery store. I started off humming through the produce aisle. By the time I got to canned goods, I felt like a bathtub out of which someone had yanked the drain plug, except instead of water draining, it was every ounce of energy I possessed. I couldn't finish. I had to hobble over to the snack bar, call my husband, and wait for him to come relieve me. This time, though, I was able to pinpoint the pain a bit more specifically. It seemed concentrated in spots just above my shoulder blades, in the lumbar region of my back, and weirdly just behind my knees.

A few more incidents - much less dramatic, thankfully - convinced me to see my general practitioner. While I was waiting in the lobby to be called back, I idly picked up a brochure out of a stack in a little white plastic container on the table next to me. To this day, I don't know why I did that - I've never done it before or since, preferring to use lobby time to catch up on email via Blackberry or read the novel I always tuck in my purse for just such an occasion. But I'm glad I picked up that brochure. As I started to read, I felt as if the writer had been spying on my life over the last month or so:

"Characterized by flu-like aches and pains ...."

"... twelve tender spots ..."

"... shoulders, low back, ... knees .... "

"... no cure...."

My devil had a name, and it was fibromyalgia.

I found out quickly that the diagnosis of fibromyalgia is one of elimination - that is, after other causes of pain are ruled out, and the evaluation criteria are met, fibro is diagnosed. I'd been fortunate enough to have been pretty thoroughly worked over by medical professionals in the preceding months, due to the back surgery, so the GP was fairly confident that fibro was the cause. A quick palpation test of the twelve tender trigger spots identified commonly with fibro sealed the deal. I had fibro, and there was no cure.

Oddly, this "no cure" business didn't deflate me. I was, in fact, elated to know that (a) I wasn't going crazy and (b) the pains had a cause, and the cause had a name. But this elation turned out to be short-lived, once the reality of what "no cure" means finally hit home.

Because there is no cure, and because fibromyalgia is a syndrome, not one illness, current treatment protocols center around addressing each symptom individually. For the pain, there was (at first) acetaminophen, or ibuprofen, or both; wet heat (those rice bags you stick in the microwave for a few minutes which produce a damp heat); tiger balm. For the lack of sleep: over the counter sleep aids, upgraded to prescription drugs when it got really bad. For the irritable bowel syndrome (IBS): raisin bran cereal every day or fiber pills and lots of water. You see, fibro is a melange of associated health ills, and what one fibro patient is saddled with might be vastly different from what the next patient deals with on a daily basis.

But there's one thing we all agree on - the monster is the pain. That pervasive, deep, radiating, flu-like pain. And there's no real solution for that pain - at least, no one solution. Over the course of four years, I must have tried every measure suggested: acupuncture, chiropractic, regular massage therapy, heat, ice, every OTC pain reliever on the market; herbal supplement regime after herbal supplement regime, yoga, Pilates_(tm). Nothing worked, at least not for long.

Finally, I returned to the same GP who'd diagnosed me those many years ago. In tears, I described my life - how the sudden onset of the flareups crippled me and caused so much stress; the lack of sleep; the depression (as a fellow patient once told a doctor, "Here - let me punch you in the chest for four years, and YOU try not getting depressed!"). I'd given up, I explained. I'd tried it all, and nothing worked sufficiently to make any improvement in my quality of life.

I was ready for drugs.

Narcotic pain relief? Yes. I'd read all the stories - the warnings about addiction, how rampant it was, how many lives it had ruined. And at that point, I felt I had no choice. I wasn't able to be present for my family in the ways that mattered. My marriage was strained; my sex life almost nonexistent. My daughter was growing up and I wasn't able to be the kind of mom I wanted to be, because all my energy, such as it was, went to dealing with this illness.

So, I walked out with a prescription and several samples of tramadol, a serious pain reliever, mildly opioid in nature. In combination with acetaminophen, it produced the equivalent of a brand name drug called Ultram_(tm), which had been deemed more effective in dealing with fibro pain than either approach alone in a recent study. I had to up-titrate (briefly, starting with a low dose and working up to a larger one) over a period of days. But immediately, the difference was clear. That very afternoon, I had my first completely pain-free moments in over four years.

That was three years ago, and I'm still talking tramadol. It manages my flareups very effectively, and I haven't gotten addicted. Though my body has become dependent on the medication - which it's supposed to do - this is a very different thing than addiction. The approach I've settled into is a combined one of OTC sleep aids, rigorous attention to diet and exercise, daily yoga, and - yes - prescription pain relief. My marriage didn't survive, but that's a good thing - cutting out relational stress also improved my overall wellbeing, which helps me manage the fibro effectively. I haven't had a serious flareup - like that crippling episode in the grocery store - in months.

Cure? No. But it's a life, and a beautiful one.