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Misunderstood Malady

      by Joan Whitely

From the Las Vegas Review-Journal, Tuesday, February 15, 2000

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Tuesday, February 15, 2000
Copyright Las Vegas Review-Journal

Misunderstood Malady
Fibromyalgia sufferers must deal with pain and negative feedback
By Joan Whitely, Review-Journal

They're told it's all in their head. They're told they're drug-seekers. They're told they need to stop malingering on the job. They are people who have been diagnosed with fibromyalgia. And they want vindication.

For many, the negative feedback from family and physicians has continued despite the fact the American Medical Association accepted fibromyalgia as a true illness and valid diagnosis in 1987. Fibromyalgia syndrome is characterized by bodywide flulike aching, stiffness and pain. In a process doctors don't yet understand, pain is amplified. That is, a stimulus such as a touch or movement will cause pain beyond what a normal person would feel. Headaches, sleep disturbance and fatigue also are part of the syndrome. Balance and clumsiness problems usually develop. So does "fibro fog," an insider term for cognitive deficits such as mental confusion or unreliable short-term memory.

"I call it the invisible illness," says Geri Beatty, 52, a Las Vegan who was diagnosed with fibromyalgia in July 1998. Onlookers, even close family members, often fail to grasp the seriousness. At her administrative job, in the maintenance department of a local casino, Beatty senses that co-workers keep expecting her to bounce back, as if her condition is not chronic.

"But you look so good" is a comment many patients hear, agrees Lisa Barreto, 42, another newly diagnosed local "FM" patient -- FM being jargon shorthand for fibromyalgia. Barreto was diagnosed in March, but believes her symptoms started appearing after she was injured in a car accident in 1994. She says she was forced to leave her job as a paralegal in late 1999 because her boss could tolerate neither her occasional fibro fog, nor her desire to lower stress by working from home.

"Only about 20 percent of (fibromyalgia syndrome) patients have a known triggering event that initiated the first obvious 'flare,' " writes Dr. Devin Starlanyl in "The Fibromyalgia Advocate," which came out in 1998. The author has fibromyalgia and specializes in treating it and related conditions. Researchers theorize that trauma or infection can trigger fibromyalgia, but have no proof.

Dr. Mervyn Willard, a Las Vegas physician who is board-certified in family medicine, estimates 20 percent of his practice is fibromyalgia patients. "FM is a demanding disease to treat, and 20 percent is more than full." To diagnose fibromyalgia, physicians use objective criteria. Eleven of 18 so-called "tender points" must be present in all four quadrants of the body. A tender point is a spot that, when pressed with minimal pressure, causes pain there. A patient, also, must have had continuous pain for three months.

The amplified sensitivity doesn't apply only to touch, but to other sensory contacts, too -- such as sounds, smells, lights or vibrations. The latest theories classify fibromyalgia as a disorder of the nervous system rather than simply of the soft or connective tissues. Starlanyl believes medicine will someday discover an imbalance of neurotransmitters and possibly hormones causes fibromyalgia. Willard says: "The spinal cord and various deep structures in the brain are overactive or improperly functioning. The brain misinterprets pain signals it receives. It also sends out abnormal signals to muscles, keeping them too tense. ... Many body tissues may be involved -- the deep centers of the brain account for a multitude of symptoms that most FM patients have."

Dr. Paul Donohue, a syndicated medical advice columnist -- whose column runs in the Review-Journal -- wrote as recently as last week that fibromyalgia is a "bona fide condition, even though there is no X-ray, no scan and no blood test that confirms its existence." And, no cure. But the times are changing. In early 1999, a New Orleans biotechnology company announced it has developed a blood test to detect an immune-system antibody that correlates well with the degree of disease severity in fibromyalgia patients. According to Autoimmune Technologies, its anti-polymer antibody test separates fibromyalgia patients from those with other diseases such as rheumatoid arthritis, systemic lupus and systemic scleroderma. The latter diseases are often confused with fibromyalgia. In 1999 as well, the Wall Street Journal reported researchers have found a new application for a skull surgery among a select number of fibromyalgia patients who also suffer from a lower-than-normal flow of spinal fluid. The surgery has reduced and even eliminated fibromyalgia symptoms in patients who "have been diagnosed with constriction of the brain or spinal cord, as a result of a too-tight skull or spinal canal," according to the fall 1999 issue of the National Fibromyalgia Awareness Campaign. It's not clear whether the surgery can benefit most fibromyalgia patients. What's certain, sufferers agree, is the syndrome drastically alters a person's life. People who don't learn to manage symptoms become increasingly housebound. Not surprisingly, many also suffer from depression. Betty Crabb, 58, a nurse who works in risk management for the Clark County School District, received her fibromyalgia diagnosis in 1997, after much personal denial.

"I thought it was a pulled (leg) muscle," says Crabb, who had been active in race walking, dancing and horseback riding. But her hypothesis didn't cover all the facts. She also was suffering from headaches and severe fatigue. Her pain didn't just stay in her leg, but started migrating to different areas, on different days. She also was diagnosed with a heart malfunction called mitral valve prolapse. Crabb's pattern fit right within the fibromyalgia profile. Through time, her condition has progressed to the point that she cannot participate in sports. She and her husband moved from a two-story house to a one-story, to accommodate her decreasing mobility. She wears braces to strengthen her knees. She works full time, but has to be stingy with her exertions. Practically every lunch hour, she must take time to rest. For Crabb, muscle-relaxant medication is out of the question because she needs to stay alert to work and drive. "It's not living if you have to be sedated."

Common treatments for fibromyalgia -- besides medications to improve sleep or lessen pain, include mild stretching and mild water exercise. Barreto says acupuncture gave her significant relief. Patti Wright, 53, has had the diagnosis longer than fibromyalgia has had its current name. When she was diagnosed in the 1970s, doctors called it fibrositis. But Wright contends that even though they gave her a term for the condition, they didn't give her respect.

"It's frustrating to be sick all the time, and have nobody believe you," she says. "To go to the emergency room (for pain), and they throw you out. ... They'd say, 'You're a drug-seeker,' " in search of painkillers. After years of indignity, she decided to take the offensive. In 1996, she and several other Las Vegans with fibromyalgia, who had been meeting regularly for coffee, decided to form a formal nonprofit support group to share their pooled knowledge. Today, the local FMS/CFS Friends Support Group has 700 members, according to Wright. FMS stands for fibromyalgia syndrome. CFS stands for chronic fatigue syndrome.

The support group has established a network of local health professionals in various disciplines -- rheumatology, neurology, pain management and physical therapy, to mention a few -- who are receptive to working with fibromyalgia patients. It has enlisted a pro bono attorney to help in situations where, for example, an employer might not want to accommodate the needs of a worker with fibromyalgia. It holds two meetings a month, several social events per month and has an active phone-contact program. "Validating a person's illness is an important part of work, believing them," Wright says emphatically.

Through the support group, Wright has encountered members she considers to be suicidally depressed. "It is not uncommon for chronic-pain patients to become depressed and threaten harmful actions -- and ... we are here to listen to and comfort them," she notes. On one occasion, Wright says she and a physician went together to visit a distressed member in the middle of the night, after that member had phoned Wright.

The support group also collects information on products that are touted as helpful in managing fibromyalgia. Scams are unfortunately abundant, admit Wright and Crabb. "You will do anything to feel better," Crabb asserts. "You don't care, because at that point, you're thinking, 'If I can do this and feel better.' " Crabb says she tried magnets, and high doses of vitamins and herbs. None worked, but the result was a wash. At one point, she signed up for a year's worth of treatment by a chiropractor, but broke their contract when she realized his deep massage techniques were actually injuring her. Wright's approach to her own chronic pain is to stay upbeat. Advocating for fibromyalgia patients is "a cause, and I'm dedicated."

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