What Your Doctor Doesn’t Know about Fibromyalgia

Just a week or two after I moved to Modesto, California, a 56-year-old woman died alone in a single-wide mobile home. Her neighbors said that she once had a successful career working for the county health department. She had a good life until she was diagnosed with fibromyalgia in 2001. Soon she was living on a disability check. She spent what little money she had on expensive vitamin and mineral supplements “guaranteed” to stop the pain. Then there were the stronger drugs, prescriptions for anti-depressants, painkillers, opiates.

I never met her. I drove by her estate sale a week after she died and slowed down to take a peek, looking for a painting or a wall clock to spruce up my new home. At first I didn't even get out of the car. From the curb, the items didn’t look particularly appealing. Then I saw her bookcase, which had been pulled out of the house and propped against the porch wall. It was filled with books on fibromyalgia and complementary texts on meditation, vitamin supplements, T’ai Chi, natural food cures, herbal remedies, suggestions on coping with chronic pain. I recognized most of them -- they were on my bookshelves. The same titles, same topics, plus a few that I hadn’t read. I got out of the car and climbed the four worn wooden steps.

A round, gray-haired women was busy lugging items out of the small mobile home. “Do you have fibromyalgia?” I asked.

“No, but the woman who lived here did.”

She seemed busy, so I paid her 75 cents for three books and left. “Be sure and stop back later,” she said. “We have a lot more books we haven’t brought out yet.”

I got in the car and skimmed through the books before I drove away. They were heavily underlined and highlighted. The phrases jumped out at me: “Try to keep a positive attitude.” “Take time for yourself.” “Explain to family and friends that you can’t do the things you used to do.” “The right foods can restore and heal your body.” From the highlighted items, it seems her disease had mirrored mine and so many others. First, determination and resolve to get better. Then denial, as any improvement turns out to be temporary, followed by intense flare-ups. Then hopelessness, as your doctor’s previously positive attitude changes as you fail to improve. The office visits become short and routine as your physician runs out of ideas and loses interest. Then maybe a different doctor. Or two. Then the search for other answers: acupuncture, chiropractors, vitamin supplements, special diets, yoga, T’ai Chi, Chinese herbs, physical therapy, biofeedback, water aerobics.
You may get a little better; you may get a little worse. If you are like most of us, your symptoms will fluctuate on a daily or even hourly basis. You may have a baseline pain of 2 to 3 on a scale of 10 at noon, but it may climb to an 8 or 9 by dinner. When the pain decreases, you believe you are getting well. You want to believe it. You have to believe it. When the pain flares, you think maybe it’s temporary and you start looking for causes. Did you exercise too much? Have you been exercising too little? Could it be a food allergy brought on by a grilled cheese sandwich you had for lunch? Are you stressed? An amusing concept, actually, because anyone who feels like their body has been crushed under a heavy truck is likely to feel a little stressed. You page through the self-help books frantically, trying to find something that applies to you, something you have yet to try. You get on the Internet; you subscribe to magazines. You go to support groups where everyone takes turns complaining. Maybe you are not there yet. You still want answers.

You work out. You rest. You go on strange diets and send for vitamins that cost $3 a pill.

You realize that the medications your doctor is prescribing are addictive, and when you ask him about it, you can tell by the look on his face that addiction is the least of your problems.

The pain wakes you up at night and it’s the first thing you recognize in the morning. It takes over your life. A good day is no longer contingent on your husband taking you to dinner or getting that raise you wanted. A good day is when the pain level is low. Period. The disease, chronic pain and the medication all interfere with your cognitive processes. One day you are driving home and you suddenly realize you don’t know where you are and you don’t know how to get home, even though you are on the same street you have been on 50 times. You confuse left and right. You say “Richard” for “Robert” and “crooked” for “cooked.”

At some point you recognize that you aren’t going to get well unless researchers come up with a miracle cure. You start to think about all the diseases for which we have no cure: Parkinson’s, Alzheimer’s, muscular dystrophy. Fibromyalgia and chronic fatigue syndrome are just two syndromes on a very long list.
You focus on coping. If you could just get a little better, you could keep your job. If you continue to work out, maybe, on good days, you will still be able to hold your grandchildren. You try various pain medicines, often taking two together, but nothing works for very long. Your body rapidly adapts to new drugs and renders them ineffective. Maybe, in the middle of the night, you wake your spouse and ask him to walk the floor with you. If you have no spouse, your thoughts may drift to suicide. Research shows that nearly every fibromyalgia patient considers suicide at one point or another. The suicide rate among fibromyalgia patients is high. In fact, two clients of Dr. Kevorkian were fibromyalgia patients. You don’t want to die, of course. You just want the pain to stop because it’s unbearable. You remind yourself tomorrow may be better. It often is. So I could trace the last five years of this unknown woman’s life by the books she had ordered. It took me about 30 minutes of skimming, however, before I added it all up: the books, the estate sale, the sad face of the woman who spoke to me. I wondered if she had committed suicide. My curiosity brought me back the next day. As I stood in front of the book rack, the door swung open and the same sad-faced woman appeared. I asked, “The woman who lived here, did she go to a nursing home?”
“No. She died.”
“How old was she?” I asked.
“Fifty-six.” My age, exactly.
“How did she die?” It was a rude question, I knew. I just felt like I had to know.
“We don’t really know,” she said. “Her heart stopped.” She busied herself momentarily with arranging some articles for sale. Then, after a long pause, she added: “We’re still waiting for the toxicology tests. The doctors had her on all sorts of pills. She might have just gotten confused, you know.” I did know. I had prescriptions in my medicine cabinet for five kinds of pain relievers, two brands of sleeping pills, tranquilizers, muscle relaxants, and an antidepressant. Just six weeks ago I had been bed-ridden, with a pain level of 8 or 9. My husband was out of town. The best part of my day was when I took my sleeping meds at night and knocked myself out. And several times when I held my sleeping pills in my hand, I had wondered how many it would take to kill me. So now I wondered if this woman who was both a stranger and a sister to me had been confused and taken too many pills, if she had taken them deliberately, or even if her heart had stopped from a heart attack from the stress of too much pain for too long. I felt sure that fibromyalgia had killed her. As I stood on the sloping porch, next to a table with electric massagers and tiny aromatherapy bottles and exotic vitamin treatments and meditation tapes, I felt a terrible sense of loss and a significant anger at the medical profession, especially general practitioners who see fibromyalgia patients every day, but often fail to diagnose the syndrome or refer patients to appropriate experts who might help them.