For years, pain, stiffness and fatigue clung to Lauren Armistead like an invisible shroud. It was tough enough to live with fibromyalgia — but the skepticism she encountered when she discussed her condition was intolerable.
“Throw out a word like fibromyalgia and you’ll get this blank stare,” the 28-year-old said recently, sitting in her Santa Monica, Calif., apartment. “For so long, it was my own private battle.”
Today, however, Armistead is slowly, tentatively opening up about a disease that is simultaneously emerging from its own mysterious black box.
A groundswell of research has begun to expose the underpinnings of the baffling disorder that affects an estimated 6 million to 10 million Americans, most of them women. Not only do the findings have the potential to ease the condition’s stigma, they also may provide clues to other illnesses for which there is no clear clause.
Fibromyalgia, experts now believe, is a pain-processing disorder – arising in the brain and spinal cord – that disrupts the ways the body perceives and communicates pain.
“There was a time when it was thought to be psychosomatic,” said Dr. Robert Bennett, a fibromyalgia expert at Oregon Health and Science University in Portland. “We now understand the pain in fibromyalgia is an abnormality in the central nervous system in which pain sensations are amplified.”
Now doctors are more likely to acknowledge fibromyalgia as a real illness. Because patients are being diagnosed and referred to specialists more quickly, they’re finding relief, and acceptance, easier to come by.
Pharmaceutical companies have jumped on the new theory of the disorder too. The first prescription drug approved specifically for fibromyalgia likely will be approved late next year or early in 2007, and at least half a dozen pharmaceutical companies are developing other treatments. Meanwhile, the federal government is funding 10 studies of the disease.
“It’s very rewarding,” said Dr. Stuart Silverman, medical director of Cedars-Sinai Medical Center’s Fibromyalgia Rehab Program in Los Angeles. “I was seeing patients before because no one else wanted to see them. Patients would tell me, ‘Everyone has told me there is nothing I can do.’ “
Fibromyalgia typically is defined as unremitting pain in multiple areas of the body – at least 11 of 18 specific tender points – accompanied by fatigue, difficulties with concentration and other vague physical discomforts. The illness is called a syndrome because the cluster of symptoms lacks the clear markers of disease, such as changes in the blood or organ function.
Because patients often look healthy, doctors have sometimes diagnosed fibromyalgia as a muscle problem or an autoimmune disorder. It can also be a “wastebasket” diagnosis, attached to people with inexplicable pain problems. Some have even dismissed it as the complaints of emotionally troubled women.
Always athletic, Armistead first experienced back pain when she was a child, but she assumed the discomfort was a part of playing sports.
By the time she had joined the UCLA volleyball team in the mid-‘90s, however, Armistead knew something was seriously wrong. After games, she would be racked with pain. She sometimes took as many as 15 over-the-counter pain pills a day.
Debilitated by pain and fatigue, Armistead quit the team and began to cut back on classes. She lost 35 pounds in eight months. In 1996, however, a doctor diagnosed her problem as ankylosing spondylitis, a type of arthritis affecting the spine, and fibromyalgia.
Today Armistead takes an arthritis medication, two sleep medications, vitamins and herbs. She undergoes acupuncture, exercises moderately and works only a few hours each day doing freelance marketing. Like many fibromyalgia patients, she is a long way from being pain free. But the new research on fibromyalgia’s causes offers a blueprint for more effective treatments.
Fibromyalgia is now thought to arise from miscommunication among nerve impulses in the central nervous system, in other words the brain and spinal cord. This “central sensitization” theory is described in detail this month in a supplement of the Journal of Rheumatology. The neurons, which send messages to the brain, become excitable, exaggerating the pain sensation, researchers have found.
As a result, fibromyalgia patients feel intense pain when they should feel only mild fatigue or discomfort – such as after hauling bags of groceries. They sometimes feel pain even when there is no cause.
Recent studies show multiple triggers for the amped-up response to pain. Fibromyalgia patients have, for instance, elevated levels of substance P, a neurotransmitter found in the spinal cord that is involved in communicating pain signals.
They also appear to have lower levels of substances that diminish the pain sensation, such as the brain chemicals serotonin, norepinephrine and dopamine. Growth hormone, which helps promote bone and muscle repair, is also found in lower levels in fibromyalgia patients.
Medications approved specifically for fibromyalgia will dramatically change treatment, Silverman predicts.
Others aren’t so sure, however. Many questions about central pain disorders remain, including why some people are afflicted and not others; why symptoms can vary so widely among patients; and whether the emerging chemical markers – high levels of substance P and low levels of serotonin and norepinephrine – cause the exaggerated pain or are its result.
This perception of fibromyalgia, while falling out of favor among many doctors, nevertheless strikes a nerve in patients and among doctors specializing in its treatment.
Fibromyalgia patients are difficult to treat, Bennett said, requiring much time and attention. Some patients never get better, although about 80 percent improve with a dedicated treatment plan and lifestyle modifications, he said.
“There is no recipe for treating fibromyalgia patients. The treatments have to be fully individualized, and that takes a lot of time,” Bennett said. “Most patients aren’t getting the treatment they need.”
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