Synopsis
Book by Nancy Selfridge Franklynn Peterson
Extrait
Chapter 1
Jean: I don't need a doctor, doctors invent illnesses that don't exist.
Berenger: Perhaps they do . . . but after they invent them, they cure them.
--Eugène Ionesco
Fibromyalgia: misunderstood, misdiagnosed misery
Come travel with us through the depths and over the peaks of one of the most mystifying sets of symptoms known to modern medicine: those of fibromyalgia. This disease is also among the most painful—whole-body pain without letup, without a pause. The authors are all too familiar with this pain, though we've been free of it for over two years. Each of us suffered with fibromyalgia over what seemed to be the longest, most tedious decades of our lives. Nancy has given birth to two delightful daughters and has had surgeries and has broken bones, yet her pain from fibromyalgia was worse. Frank has been divorced twice, but the stress and turmoil of those family wars was no match for fibromyalgia.
Fibromyalgia now rides on the backs of at least four million Americans, about 2 percent of our population. Many know what it's called; many are still undiagnosed, or diagnosed incorrectly with every malady from arthritis to tendonitis. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) repeats figures counted by the conservative American College of Rheumatology: three million to six million cases in the United States. Overall, 3.4 percent of women struggle with the illness, including about 7 percent of women between sixty and seventy-nine years old. Men are not immune; maybe they're just more reticent to come forward to have their symptoms diagnosed.
Fibromyalgia knows no racial boundaries. It also knows no geographic boundaries. Two percent of the world gets up every morning unrested and sore and goes to bed very early every evening still exhausted, still sore.
After a few years with fibromyalgia, the tears may stop flowing while the pain pounds on. On some days, in self-defense, the mind spreads a confusing balm over the brain that makes it seem as if the pain is subsiding. But it also seems to slow down thinking. Though doctors don't yet have a name for this common experience, fibromyalgia sufferers call it "fibro fog." When fibro fog comes on, the senses seem powered by a nearly dead battery. Our tongues feel thick and stiff, unruly; our eyes seem veiled in gauze. Coordination lapses. We drop things. We stumble, sometimes seeming to look like drunks. Our brains don't even feel as if they're connected to themselves. Words get lost. Memory skids. Thoughts seem to slow down and seize up.
Many of us welcome this fibro fog because it seems the only respite available from our near-constant pain—quicker than the lidocaine and methadone some doctors have prescribed, more relaxing than the spinal blocks others have tried. Yet when researchers try to find out exactly what causes the fog or how it works, they've found it elusive. Neuropsychiatric testing often turns up nothing abnormal or a vague increase in distractibility.
Nobody has ever directly died of fibromyalgia. But neither has anybody really lived with it. It takes over every life it enters. It may grudgingly retreat, but not far, when attacked with the best painkillers known to modern science. A common scene at a local fibromyalgia support group is the youngish fibromyalgia sufferer dragging her shiny steel hospital-issue intravenous support. Day and night, it drips the soothing painkiller lidocaine into her veins.
Fibromyalgia can make people desperate. Probably the most controversial were the reported euthanasia patients of Dr. Jack Kevorkian, Michigan's "Dr. Death," who were fibromyalgia sufferers seeking relief from constant pain. We should at least thank Dr. Kevorkian for believing that their pain was real; so many of his peers pirouette away, not sensing that a soul could be so exhausted, it feels it can't live another night with fibromyalgia. But we wrote this book to give fibromyalgia sufferers hope so that you'll choose life. We hope its message will inspire and support those of you who feel like you've been trapped in hell for years.
Fibromyalgia does strike some youngsters. Dr. Selfridge had it in her teens. But the average age of onset is in middle age. It mostly hits people who've led full lives, compulsively working at a career, having a family, and joining the PTA, often delaying the fun things for later. But once fibromyalgia hits, there is no later. The pain traps you in the moment, and as it digs deeper, the future can become too painful to contemplate.
Family and friends of fibromyalgia victims often go through another kind of hell. They watch the pain, helpless to make it go away, even helpless to distract the sufferer long enough to enjoy a bit of life. They hear conflicting stories from doctors, read conflicting stories in the popular press; they become conflicted, sensing the pain their loved one bears while once-trusted authorities declare that the pain isn't real, that the illness is all in the head. The fibromyalgia victim is often blamed and isolated, and sometimes divorced or abandoned. Alienated by prejudices, misinformation, and conflicting opinions by half-informed family members, doctors, social workers, and insurance claim adjusters, fibromyalgia sufferers find themselves shunted onto islands of isolation with only other fibromyalgia sufferers for company—and believe us, we're not often good company.
When you add up these sufferers and include their immediate families, at least 6 percent of the world's population live greatly diminished lives because of fibromyalgia—ten million to twenty million people in the United States alone, five hundred million throughout the world. In northern England, 11.2 percent of adults suffer with chronic widespread pain like that of fibromyalgia.
Fibromyalgia saps an estimated $24 billion from the U.S. economy every year in lost wages. Up to another $4 billion is wasted on unsuccessful conventional treatments; additional millions are spent on herbs, massages, acupuncture, audiotapes, and underground medications. When Franklynn heard that there was no cure for fibromyalgia, he headed for the health food and vitamin department of a large supermarket with only one question: Should he start at the A end of the shelf or at the Z end? He grabbed a bottle of arginine. Within the year, he'd worked his way down to E, echinacea. That seemed to bring some relief, and he stuck with it for a while, increasing the number of pills over time. But after a few months the pain returned in full force.
Fibromyalgia is so tricky to diagnose that the typical sufferer spends over five frustrating and demoralizing years shuffling from doctor to doctor, from specialty to specialty. Then, once diagnosed, there's usually another stretch of years as doctors and quasi-doctors experiment with a variety of uncertain treatments.
Delores, a thirty-eight-year-old mother of two, a fine artist from Tennessee, had a throat infection, fever, extreme tiredness, and severe pains in her hips, knees, and ankles. Her family doctor, who found nothing, sent her to an infectious-disease specialist. Finding nothing, he sent her to a rheumatologist, and she ultimately saw a neurosurgeon, who recommended a spinal operation. A good friend's sister, a nurse, told her she'd be crazy to go through such a delicate operation when none of the doctors was sure what was wrong. But Delores was taking antidepressants, prescription painkillers, and a few pills she could neither name nor tell you just what they helped with. After three years of running through a maze of white coats and enormous bills, she was feeling desperate.
The sister recommended that Delores first visit Nancy Selfridge, a family practitioner outside Madison, Wisconsin. Dr. Selfridge had just recently brought herself almost complete recovery from decades of fibromyalgia pain through a plan she'd devised after reading Dr. John E. Sarno's insights into back pain in his book The Mindbody Prescription. She taught Delores her program—and in two weeks Delores could use her knees, hips, and ankles without grimacing. She was able to quit one medication after another with her doctor's support.
Some think fibromyalgia is a new disorder. In truth, it's a constellation of symptoms that has been known since before the start of the twentieth century. Many in the media think fibromyalgia is what doctors call a status diagnosis, as trendy as getting your nose fixed or your tummy tucked. In truth, from 10 to 30 percent of all fibromyalgia sufferers are forced to survive on meager Social Security disability payments even though most of them are well-educated, intelligent, goal-oriented overachievers. Those virtues may in fact be their downfall, the prime mover or complicator that eventually triggers fibromyalgia.
Fibromyalgia is physical. It's not "all in your mind," despite what many doctors have told sufferers. It affects portions of the nervous system, including the centers that oversee our involuntary reactions such as heartbeat and breathing. It may start there, in what's known as the autonomic system—but many researchers now believe that it starts somewhere else and heads there. While affecting the autonomic portions of our nervous system, it sends physical signals all over the body, triggering pain and other symptoms.
The pain is involuntary—and it is real. It can be measured. Some of the biochemical changes it creates in the body and brain have been documented in lab experiments and reported in medical journals. One measurable physiological effect of fibromyalgia is that the body's most painful muscles and tissues receive less oxygen than normal.
If only doctors could manipulate this reckless set of biochemicals, we might be able to cure fibromyalgia. Many researchers are pursuing this approach. What complicates the search for a cure is that there are at least a hundred unique biochemical messengers, or neuropeptides, that facilitate communication between brain and body. The...
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