Eighteen months ago, Reba Buckley fell in a parking lot and hurt her left knee.
Over the next eight months, the throbbing ache spread–first to her hips and back, then her elbows and neck.
She bounced among a half-dozen specialists, trying everything from physical therapy to heat packs to prescription pain killers. Nothing helped.
“I thought I was crazy–people think you’re imagining the pain,” says Buckley, 38, an administrative assistant at the University of Miami.
She wasn’t. Six months ago, a rheumatologist diagnosed Buckley’s ailment: fibromyalgia, a baffling condition characterized by searing pain and numbing fatigue. Affecting 3.7 million Americans, mainly women 20 to 55, it’s one of the most common types of pain syndrome.
“People with fibromyalgia can get so frustrated,” says Jennifer Verdi, 45, a Coconut Creek, Fla., psychotherapist with fibromyalgia who also runs support groups for those with the condition.
Looking for answers, doctors will examine fresh research on fibromyalgia next month at the American College of Rheumatology’s annual meeting, in Washington.
Frustrating to doctors and patients, fibromyalgia, only recently accepted by some physicians as having a biological link, has no known cause or cure, though theories abound.
Some doctors believe that an injury or trauma, physical or emotional, may affect the central nervous system’s response to pain, says Dr. Doyt Conn, co-author of “Your Personal Guide to Living Well With Fibromyalgia” (Longstreet, $14.95).
Others believe an infection, such as a flu virus, may trigger fibromyalgia. Some researchers have turned their interest to similarities between fibromyalgia and chronic fatigue syndrome, another condition of unknown origin.
But the hottest area of research now looks to hormones as the key. Here’s why:
About a third of fibromyalgia patients have a growth hormone deficiency, says Dr. Robert Bennett, director of the division of arthritis and rheumatic diseases at the Oregon Health Sciences University in Portland. That’s important because the growth hormone helps in muscle maintenance and repair.
Some studies show that people with fibromyalgia have abnormal levels of two important hormones: substance P, which signals the pain process to begin, and serotonin, a natural painkiller that also plays a role in sleep regulation. Dr. Jon Russell, director of the University Clinical Research Center at the University of Texas Health Sciences Center in San Antonio, has found elevated levels of Substance P and low levels of serotonin in people with fibromyalgia.
Other studies point to stress hormones secreted by the adrenal and pituitary glands. Those with fibromyalgia have more pituitary hormone activity and less adrenal activity after they’ve been stimulated, says Dr. Leslie Crofford, assistant professor of internal medicine at the University of Michigan.
Still, it isn’t clear whether any abnormality discovered in a researcher’s lab is a cause or an effect.
“Fibromyalgia is like life,” says Dr. Frederick Wolfe, a Wichita, Kan., rheumatologist who has collected fibromyalgia data for 24 years. “There are no clear-cut answers.”
Buckley learned that firsthand, going from general practitioner to orthopedic surgeon to chiropractor to physical therapist to neurologist to rheumatologist before she was diagnosed.
Fibromyalgia doesn’t make it easy for doctors. It doesn’t show up on X-rays or lab tests. Patients often look healthy, with no external signs of pain or fatigue. Sometimes the problem is diagnosed only after excluding other possibilities with a battery of lab tests.
Most medical schools began teaching about fibromyalgia only in the past few years. The first scientific indication that it even had a biological link came only in 1975. That’s when two Canadian researchers first described sleep abnormalities in patients with chronic pain and “tender points,” places on the body that ache when pressure is applied.
After these same patients described debilitating fatigue, researchers studied their sleep patterns and found the people deficient in what’s called Stage 4 sleep–the deepest, most restorative stage. Then, when they interrupted the sleep of otherwise healthy people over three consecutive days, the subjects described many of the same symptoms associated with fibromyalgia: aches, pain and tenderness.
Since then, research has turned up more biological links, finally freeing patients from the specter of a psychological illness, which only led to more anxiousness and more depression and exacerbated their condition. Indeed, the more people know about fibromyalgia, the less traumatic it usually is.
