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On pain's trail

Exploring fibromyalgia's mysteries, researchers look to the central nervous system, gaining deeper insight into why we suffer.

August 22, 2005|Shari Roan | Times Staff Writer

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 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 & 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 will likely 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. "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.' "

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The difficulty of diagnosis

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.

Many fibromyalgia patients stumble around for years seeking help for their symptoms -- even after receiving a diagnosis. 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.

Coaches and trainers, alarmed at her use of painkillers, insisted she undergo medical tests. Over a year, Armistead saw numerous doctors but got no answers.

"Eventually everyone started doubting whether or not I was really in pain," she said. "My coach couldn't understand how I could play one day and be bedridden the next."

Debilitated by pain and fatigue, Armistead quit the team and began to cut back on classes. She lost 35 pounds in eight months. It was a time in her life "so painful, I've tuned a lot of it out."

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.

"With each passing year I've accepted the cards I've been dealt," she said. "I'm not giving up. I keep trying new treatments."

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The evolution of treatment

Armistead, like many fibromyalgia patients, is a long way from being pain-free. But the new research on fibromyalgia's causes offers a blueprint for more effective treatments.

For years doctors had been looking for a cause of fibromyalgia at the site of the pain: the head, back, hands, neck, gut or elsewhere. And their treatments focused on soothing pain in these locations. As their understanding has grown, however, these treatments have begun to change and new ones are in development.

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