'The invisible disease'

Fibromyalgia is characterized by widespread pain and fatigue.

• "Drug approved. Is disease real?"
• "Does it really exist or is it all in women’s heads?"
• "The doctors are in. The jury is out."

The New York Times' headlines rankle Barbara Keddy. For more than 40 years, she has suffered from fibromyalgia, a chronic disorder characterized by widespread pain and fatigue. But the condition is little understood and difficult to diagnose. As borne out by the headlines, some doctors are hesitant to acknowledge it even exists.

After retiring from teaching at Dalhousie University four years ago, Dr. Keddy decided it was time for an in-depth investigation of fibromyalgia, which is much more common among women than men and so has become known as primarily “a woman’s disease.” As a nurse, medical sociologist, university professor and researcher who suffers from the condition herself, she has a unique perspective to offer.

Drawing on her own experiences as well as those of 19 other women, Dr. Keddy discusses current theories of causes and treatments in her book, Women and Fibromyalgia: Living with an Invisible Dis-ease (iUniverse Co.). She also maintains a blog (www.womenandfibromyalgia.com) exploring the daily difficulties faced by fibromyalgia sufferers.

“When I became affected by this (after the birth of her first child by Caesarian section), they didn’t know what to call it,” says Dr. Keddy, professor emerita with Dalhousie’s School of Nursing, who was finally diagnosed with fibromyalgia 30 years after first experiencing the symptoms. “All I knew is that I was sore all over.”

“Sore all over” is a refrain among fibromyalgia sufferers, who have been stigmatized as chronic complainers, says Dr. Keddy. Other symptoms include generalized stiffness, sleep disturbance, fatigue, depression, lack of concentration and digestive upsets. The musculoskeletal condition is aggravated by dampness and difficult weather conditions. The pain can be managed—climates with dry heat help, as do some medications—but it doesn’t go completely away.

“The audacity! The women who have this condition hurt in all the same places and have the same symptoms. So how can they say that it’s all in women’s heads?”

She suspects many more women have fibromyalgia than have been diagnosed. Called “the invisible disease,” fibromyalgia doesn’t affect the major organs, can’t be revealed with x-rays or blood tests and isn’t life threatening.

Because of the soreness and pain it causes, fibromyalgia has come to be associated with arthritis and rheumatism. But Dr. Keddy believes the condition is a neurological hypersensitivity, caused by an over-stimulated nervous system.

“Fibromyalgia involves pain in the muscles, whereas arthritis is in the joints—but somehow fibromyalgia has landed there (with arthritis) as a home base,” she says. “My thinking, and I’ve interviewed hundreds of women not just the 20 who are profiled in the book, is that it’s due to a hyper-aroused nervous system.”

Dr. Keddy believes women are more susceptible because they are caregivers, thinking about others before they think of themselves. “Some women have highly developed intuitive skills honed to such an intense stage that the nervous system becomes highly sensitive and hyper aroused,” she says. “Then, there’s a trigger, a dramatic event—perhaps the death of a loved one or an operation such as a hysterectomy—and the nervous system is pushed to the extreme.”

Women and Fibromyalgia, with a forward by Dr. Jock Murray, is available through Dr. Keddy’s website.