Lynne Matallana likens the pain that wracked her body to acid running through her veins. It came on after uterine surgery in 1993—a traumatic event, since she woke up in the middle of the operation—and it never went away. In the two years that followed, she saw 37 doctors. They diagnosed her with lupus, blamed her pain on stress, or said it was all in her head. None of the remedies they recommended helped. "I had pain everywhere," she says. "I couldn't wear jewelry because it hurt when it touched my skin. I had to put a pillow at the foot of the bed so the sheets wouldn't touch my feet."
Things are now very different for Matallana, eventually diagnosed with fibromyalgia. That painful condition affects an estimated 6 million Americans, mostly women. Because it has been poorly understood and is defined by symptoms, not lab tests, many patients face skepticism from doctors and go untreated. With the help of a supportive, young doctor, Matallana has managed to keep her pain at bay enough to work—she cofounded and now directs the National Fibromyalgia Association, a nonprofit—and to run up to a mile and a half on the treadmill several days a week. Thanks to a growing understanding of the condition and new drugs, patients are less likely to encounter the kind of skepticism faced by Matallana, and more likely to find relief.
Sufferers of fibromyalgia experience a suite of symptoms: chronic pain throughout the body, sleep problems, and fatigue. In some, this syndrome starts with no warning; others get it after a traumatic physical injury, a viral infection, or stressful life event. Symptoms can come and go.
Not hysteria. For years, doctors thought the problem must be at the tissues or nerve endings—that is, at the places where it hurt. When they couldn't find hallmarks of injury such as inflammation or nerve damage, many threw up their hands and chalked up symptoms to depression, anxiety, or that all-purpose grab bag for female complaints: hysteria. Over the past decade or so, doctors have come to understand that fibromyalgia is actually a problem of the central nervous system—the brain and the spinal cord—not the peripheral nerves that branch into organs, limbs, and skin.
More recently, researchers using functional MRI scans have found that people with fibromyalgia have increased activity in areas of the brain dealing with where and how much it hurts. In other words, far from being whiners, they are wired to be exquisitely sensitive to pain. "It's not something they're imagining," says Daniel Clauw, a rheumatologist and director of the Chronic Pain and Fatigue Research Center at the University of Michigan. An imbalance of neurotransmitters— chemicals that nerve cells use to communicate—is suspected of being involved in fibromyalgia, just as it is in depression. In fact, many people with fibromyalgia also have depression, and there's probably a common genetic disposition to developing both, says Don Goldenberg, chief of rheumatology and director of the Arthritis-Fibromyalgia Center at Newton-Wellesley Hospital in Newton, Mass. But he and others emphasize that the pain syndrome is not merely a symptom of depression.
Until recently, there was no official treatment for fibromyalgia. While doctors have used antidepressants and pain drugs off label for years, the Food and Drug Administration in June approved the first drug specifically for the condition: Pfizer's Lyrica, which was already used to treat epilepsy and neuropathic pain. In one study, 30 percent of patients taking 600 milligrams of Lyrica a day said their pain was cut at least by half. Of those taking a placebo, only 15 percent reported such a reduction in pain. Pharmaceutical company Eli Lilly has applied to the FDA to market its antidepressant Cymbalta to treat fibromyalgia. Another drug, milnacipran, is expected to be submitted for FDA consideration by year's end. All told, the market-forecasting firm Datamonitor says about 20 drugs are in development.
Lifestyle changes—exercise, a sleep plan, and other self-management techniques—could be just as important as the new drugs, say patient advocates and scientists. The medications are likely to work only in some people and won't be a cure-all. "We need to have the mix available," says Shanda Shribbs, executive director of the National Fibromyalgia Research Association. Matallana, who uses medications, yoga, and exercise to control pain, says, "I still get calls from patients who say they've been told nothing can be done." Yet she jokes about the imprimatur of an FDA-approved drug. When Lyrica was first approved, she says, "my friend told me, 'Your pain wasn't real yesterday, but today it is.'"