Fibromyalgia: Cure for a baffling disorder? The Los Angeles Times Monday, August 29, 2005 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, which affects an estimated 6 million to 10 million Americans, most of them women. The findings not only have the potential to ease the condition's stigma but also may provide clues to other illnesses for which there is no clear clause. Fibromyalgia, experts now believe, is a pain-processing disorder that arises in the brain and spinal cord and 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 probably will be approved late next year or early in 2007, and at least a half-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 at least 11 of 18 specific tender points in the body, 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 sometimes have diagnosed fibromyalgia as a muscle problem or an autoimmune disorder. It also can be a "wastebasket" diagnosis, attached to people with inexplicable pain problems. Some have even dismissed it as the complaints of emotionally troubled women. Years seeking help Many fibromyalgia patients spend 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. However, by the time Armistead had joined the UCLA volleyball team in the mid-'90s, she 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 that she undergo medical tests. Armistead saw numerous doctors during a yearlong span 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." Hormone 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. 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. "The pain of fibromyalgia is not occurring because of some injury or inflammation of the muscles or joints," said Dr. Daniel Clauw, a fibromyalgia researcher and director of the Center for the Advancement of Clinical Research at the University of Michigan. "There is something wrong with the way the central nervous system is processing pain from the peripheral tissues. It's over-amplifying the pain." 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 change treatment dramatically, Silverman predicts. "Fibromyalgia will get a lot more respect," he said. "People will think there must be a disease if there is a medicine for it. It must be treatable." 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. Doctors have doubts The central sensitization theory hasn't convinced everyone that fibromyalgia is a real illness, said Dr. Nortin M. Hadler, a professor of medicine, microbiology and immunology at the University of North Carolina. It's possible that fibromyalgia patients simply have a different mind-set, he said. They tend to catastrophize small burdens, exaggerate minor discomforts and quickly lose hope. This psychic despair, he said, can alter neurotransmitters and influence other central nervous system functions. "Is central sensitization something we want to label as a pathological process or is this something we are all capable of doing if we prepare ourselves intellectually?" he said. 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, requiring much time and attention, Bennett said. 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."