Researchers are trying to pinpoint the cause of a mysterious syndrome that causes pain, fatigue and other maladies so they can treat it appropriately.
It's called fibromyalgia and it strikes mostly women like Donna Paduano.
Nine years ago, Paduano was in a failing marriage, raising two young sons in Connecticut, working full time and managing some chronic health problems. Such challenges would wear anyone out, but Paduano was feeling more than fatigued—she was also in pain.
"It felt like somebody hit me with a baseball bat — but all the time," says Paduano, who was told by a rheumatologist that she was suffering from fibromyalgia.
Says the 43 year-old Paduano, who has rebuilt her life in San Diego: "You're not going to die from fibromyalgia, but you'll always have to live with the chronic pain. That's what fibromyalgia is."
The Symptoms of Fibromyalgia?
In fact, fibromyalgia is a chronic pain disorder characterized by generalized muscle pain. Sufferers count about a half dozen "tender points" where pain is intense. These points are in the neck, shoulders, below the elbows, and the lower back, hips and legs.
Paduano primarily experienced fatigue, generalized soreness and pain in her back and shoulders.
And fibromyalgia can be accompanied by a host of other wide-ranging conditions, ranging from irritable bowel syndrome to depression.
Fibromyalgia: A Condition Often Misdiagnosed
Although people have suffered with it for a long time, fibromyalgia only got its name in the last decade. But because of the far-ranging and seemingly disparate symptoms, many physicians misdiagnose the condition as osteoarthritis, depression or anxiety. Even more disconcerting to Paduano and fellow sufferers is that fibromyalgia is considered by many doctors a "waste basket" diagnosis — often reserved for hypochondriacs and preoccupied women.
Fibromyalgia strikes an estimated 4 million to 6 million Americans. It's especially common in older women. Dr. Don Goldenberg, a medical advisor at the Arthritis Foundation, says 3 percent of women have fibromyalgia at age 40; 7 percent by age 70.
Goldenberg, also chief of rheumatology at Newton-Wellesley (Mass.) Hospital says about 80% of those with fibromyalgia suffer from extreme fatigue and sleep disturbance, while irritable bowel syndrome plagues as many as 70 percent of sufferers. Other common problems, in addition to depression, include anxiety, headaches and cognitive problems.
For Mary Anne Saathoff, president of the Fibromyalgia Alliance of America and herself a sufferer, it was leg pains and sleep disorders that began as a child and worsened with adulthood.
"I felt more dead than alive," says Saathoff who was diagnosed in 1986 with fibrositis — fibromyalgia's precursor name. "It certainly takes a great toll."
No Proven Cause, No Known Cure for Fibromyalgia
The medical community has only recently started to get a handle on fibromyalgia. In the 1980s a few specialists began developing treatments for the non-fatal condition, and in 1990, the American College of Rheumatology gave the syndrome its name. Within the last decade, researchers have learned more.
"We no longer think this is a disease primarily of muscle," Goldenberg says, "but one of the central nervous system."
While researchers have not proven what causes fibromyalgia, there are a number of theories, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
The leading theory is that fibromyalgia is caused by a disregulation or imbalance of neurotransmitters in the brain like serotonin, which helps to ease physical pain.
Some scientists believe an unidentified infectious agent, such as a virus, may trigger fibromyalgia in certain people. Extreme stress, injury and trauma are also believed to trigger the syndrome.
When confronted in this way, the brain moves into a defensive posture to protect itself. "A lot of things showing up [in research] are very complex," says Tamara Liller, head of the Fibromyalgia Association of Greater Washington, Inc.
Liller, who has suffered with the condition for 20 years, this is why the average primary care physician still does not have a good handle on the condition. "You're getting into heavy duty brain theorizing."
Some of the most exciting research on fibromyalgia involves the Flexyx Neurotherapy System (FSN). Developed a decade ago by California social psychologist Len Ochs for research on learning disabled kids, FSN uses pulsed radio waves to subtly manipulate brain wave activity and help the brain function normally.
Coping with Fibromyalgia
Coping with fibromyalgia is "like peeling an onion," Liller says. With so many symptoms, "you have to peel away at the layers to get people to feel better. What's tough with fibromyalgia is that not everyone responds the same way [to treatment]."
What works for one fibromyalgia sufferer may not work for another, however, medication and exercise are known widely for helping to manage the condition.
Like many fibromyalgia sufferers, Paduano takes low-level doses of the antidepressant Elavil which helps her relax and break the cycles of disturbed sleep that exacerbate her pain. The same antidepressant also helped Saathoff drop what had become mandatory naps and to feel better overall.
Exercise is also critical to combating the symptoms of this condition. Paduano finds that water exercises are particularly helpful. She also believes that meditation has helped her to limit the medications that she would otherwise need to help manage her symptoms.
"The people who seem to do well are the ones who are open-minded and open to working with others in a multi-practice approach," Liller says. Such an approach may include one or more of the following: physical therapy, massage, chiropractic, osteopathy, aerobic exercise, biofeedback and other relaxation therapies, behavioral therapy, acupuncture and nutritional therapy.
In their "Encyclopedia of Natural Medicine," noted naturopaths Michael Murray and Joseph Pizzorno recommend that those with fibromyalgia take 100 mg of 5-Hydroxytryptophan (100 mg), St. John's Wort extract (300 mg, 0.3% hypericin content) and magnesium (150 to 250 mg) three times a day. 5-HTP is converted to serotonin. Low levels of serotonin levels are linked to depression and to fibromyalgia. St. John's Wort extract together with 5-HTP were shown to have "significantly better results" than either one alone, the authors said. Magnesium helps to boost energy.
But Goldenberg of the Arthritis Foundation says getting a correct diagnosis and information on the syndrome goes a long way to help sufferers manage fibromyalgia. He and others also stress the importance of finding a physician who is familiar with the syndrome — and to find one who will listen.