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Fibromyalgia — the ultimate mystery disease

With the discovery of antibiotics and “wonder” drugs, plus technological advancements in surgery, it would seem modern medical science has the world’s health problems stitched up.

Well ... not quite.

There is a final frontier that medical science has run into like a car hitting a brick wall. It’s a case of the unstoppable force and the immovable object: Mysterious, chronic illnesses with no apparent cause — or possibly dozens of causes, all seemingly unrelated, but coinciding to create misery.

The local Fibromyalgia & Chronic Pain (citizens) Support Group was formed to investigate these mystery diseases and search for new treatments.

Mainstream doctors can’t decide if it’s “all in their heads” or a real disease caused by a host of factors that may include inherited predisposition, diet, environment, lack of exercise, obesity, stress or even new microbes that can’t be detected or that lie dormant for years before exploding into disease.

There’s chronic fatigue syndrome and a rare sleep disorder called the alpha-EEG anomaly, irritable bowel syndrome, chronic or migraine headaches, “temporomandibular joint dysfunction syndrome” (jaw and head pain) and fibromyalgia syndrome, among others.

“At each meeting we leave with more information than we had when we arrived,” said the president of the group, Melody Moyle. She and her mother are both members.

Keynote speaker at the group’s Jan. 15 meeting at Bremerton’s Cafe Destino was Cyndy Ayers, a Seabeck dietician.

“I was pretty much trained to the four food groups,” she said, adding that her traditional view of what makes a good diet was blown apart after a chance meeting with an orange farmer.

“We were on the same airline flight,” she said. And as the conversation progressed, she was shocked to hear the man say, “I’m afraid some of our oranges don’t have any Vitamin C in them at all.”

He was referring to how modern oranges — and most modern produce — has been specially bred for transport and shelf life — not nutritional value. “This was in the 1970s,” she said. “It started me on a search for natural foods and how they’ve been changed.”

She told of meeting and treating a woman who had been on the fast-track in her career but who suddenly found herself too tired to get out of bed. The diagnosis was chronic fatigue syndrome. The woman spent seven years in bed, while taking a “grocery bag of stuff — anti-depressants and the like — that did no good,” said Ayers.

“It used to be called the ‘Yuppie disease,’ because it only seemed to hit very active (upwardly-mobile) people,” she said. Doctors treated the symptoms — poorly — but had no idea of the cause. More recently, a viral theory has been put forth, and it’s been discovered that eventually CFS patients heal on their own, though it can take years.

Fibromyalgia victims don’t fair as well. The disease seems resistant to treatment. Some people experience remission for a while or for life. Most seem to continue suffering indefinitely, said support group members.

Ayers said she believes it’s an autoimmune disease similar to Lupus. Autoimmune diseases occur when the body’s immune system attacks the body it inhabits, rather than foreign disease elements such as a virus or bacteria.

Fibromyalgia syndrome is a musculoskeletal pain and fatigue disorder with no known cause. It attacks the soft tissues — pain appears in the muscles, ligaments and tendons. More women than men are affected. Overlapping diseases include chronic fatigue syndrome, Gulf War Syndrome and multiple chemical sensitivities syndrome.

Lab tests reveal nothing. But patients often complain of between 11-18 “tender” points on their bodies. Roughly 75 percent of FMS patients meet the tender-point criteria. Though the cause is still unknown, literature given out by the group reports there are many possible triggering events: It may follow a severe viral or bacterial infection, a shock to the system such as a traffic accident, the development of other disorders such as rheumatoid arthritis, lupus, or hypothyroidism. The underlying cause may be insufficient serotonin and norepinephrine (hormones regulating pain and various internal automatic functions in the body), immune system problems, sleep physiology, and hormonal control.

Ayers said the new science of glyco-biology may offer relief at last for fibromyalgia patients.

“At first I thought it was snake oil,” she said, “but now, thousands of (medical science) papers have been written on the subject.”

The science theorizes that fibromyalgia, and possibly other mysterious, chronic diseases, may be caused by the body confusing the right carbohydrates with the wrong carbohydrates. “Carbs,” or sugars, are like gasoline for the human body. It’s long been known some sugars are better for you than others.

“It’s no one thing,” she cautioned. “There’s no magic bullet ... it takes the right diet, massage, and exercise. Echinacia (an herbal treatment) may help.”

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