Plagued by such extreme pain and fatigue that she couldn't leave her bed, Lynne Matallana thought she had lost her mind. What she did lose was 2 1/2 years of her life. That's how much time passed before doctors finally diagnosed her with fibromyalgia, a chronic illness in which the body's pain response goes haywire.
Looking back, Matallana believes the trauma of waking up during a surgical procedure triggered the fibromyalgia. Others also trace the onset of the syndrome to a traumatic or painful event, including car accidents or a difficult childbirth.
If (doctors) take away the credibility of the illness, then people give up,'' says Matallana, founder of the National Fibromyalgia Association based in Orange County.The damage that can be caused by being told the problem is psychological is the most devastating thing that can happen to a person.''
Fibromyalgia once was dismissed by doctors as a phantom of the female imagination. But scientific research into pain response has shed light on the misunderstood syndrome and vindicated the 6 million Americans - mainly women and many of whom feared that they had gone crazy. About 10 percent of fibromyalgia patients are men.
The problem with fibromyalgia is invisibility. High cholesterol can be measured in a blood test. A broken bone can be X-rayed. But doctors couldn't see fibromyalgia with conventional methods and remained puzzled by the array of symptoms, which besides widespread stiffness and aching often included fatigue, headache, irritable bowel, sleeplessness and depression.
Validation came in 1990 when the American College of Rheumatology established 18 tender points common in fibromyalgia and set criteria to help diagnose the syndrome. By the mid-1990s, rat studies created a window into the physiology of pain. When rats were stuck repeatedly in the thumb of their paw, the pain response didn't remain limited to the thumb but soon spread to the entire paw, says Dr. Stuart Silverman, founder and medical director of the Fibromyalgia Outpatient Rehabilitation Program at Cedars-Sinai Medical Center in Los Angeles.
In a normal pain response, pain signals travel up the spinal cord to the brain. The brain then sends a chemical response to dampen the pain. But in fibromyalgia patients, the pain signals overrun the brain's response. Those pain signals traveling to the brain accelerate, while the brain's response decelerates, Silverman says.
These changes in neurochemistry not only explain the pain but why fibromyalgia patients also suffer from overlapping syndromes, including migraine, irritable bowel and chronic fatigue, says Dr. Muhammad Yunus, professor of medicine at the University of Illinois College of Medicine in Peoria. Yunus, who has researched fibromyalgia for more than 20 years, says all of these conditions - which afflict more women than men - share a neurochemical basis. He calls them central sensitization syndromes, meaning patients are hypersensitive to any stimulus, not just pressure or touch but also noise, light and weather.
When you put them as a group, they are probably the most common reasons a patient comes to a clinician,'' Yunus says.We need more funding and attention. These conditions cost the whole nation a lot of money. They disrupt lifestyle and family life.''
As the understanding of pain pathways has increased, pharmaceutical companies have been spurred into action. Several companies are now testing drugs to treat fibromyalgia and are racing to be the first to bring one to the market, Silverman says. A medication aimed specifically at fibromyalgia would provide another tool in what is currently a multifaceted approach to treatment.
Because of range of symptoms, fibromyalgia patients could spend all of their time visiting specialists - one for the pain, another for gastrointestinal distress, yet another for depression. Rather than have specialists tackle each problem separately, some doctors have created patient-centered programs with a team approach.
At Cedars-Sinai Medical Center in Los Angeles and Kaiser Permanente in Woodland Hills, the programs emphasize education, teaching the patient to take an active role in managing the syndrome, which waxes and wanes.
The Cedars-Sinai Fibromyalgia Rehab Program coordinates the patient's medical care. The patient then attends group seminars over six weeks that teach lifestyle changes and coping techniques. Components include stretching and strengthening exercises, nutrition and sleep.
Because fibromyalgia is all about increased hypersensitivity, they need to become more hardy,'' Silverman says.If you are out of condition, even simple tasks cause discomfort. Indian gurus who sleep on a bed of nails feel pain, too, but they have trained their brains that it doesn't make a difference to them. Fibromyalgia patients may still be in pain, but they can manage and cope with it better.''
At Kaiser Permanente in Woodland Hills, fibromyalgia patients attend group sessions for five weeks, where they meet with doctors, nutritionists, physical therapists and social workers. On a recent day, physical therapist Cheryl Fish led four women through gentle stretching and exercises designed to build up trunk muscles. As they worked on an easier version of the sit-up, Kathleen Weisel of Canoga laughed in frustration.
I'm just thinking, 'This is terrible,' '' Weisel said, as she lay on her back, head propped on a pillow.I used to be in (the gym) every day.''
``We need to celebrate our small achievements,'' Fish reminded the group.
Feelings of frustration and loss are common among fibromyalgia patients. During periods when they feel better, fibromyalgia patients often push themselves too hard in the desire to return to normalcy, Matallana says. A strong social network can help people weather the emotions that come with the syndrome's ups and downs. Matallana encourages people to join one of the local support groups, which her organization lists on its Web site.
Moderation and common sense are important in dealing with fibromyalgia,'' Matallana says.Be kind to yourself.''
People with fibromyalgia no longer have to fear the pain is all in their heads. The phantom is gone, shifting the focus to coping and the search for a cure.
(The Los Angeles Daily News web site is at http://www.dailynews.com)
c.2004 Los Angeles Daily News