By: Jean Johnson for Uterus1
Even the touch of the sheets was excruciating. And the feel of someone’s hand or a light bracelet on her wrist sent pain shooting up Lynn Matallana’s arm.
Widespread pain, disrupted sleep and fatigue
Enhanced pain from headaches, endometriosis, irritable bowel and bladder syndrome, neurological symptoms (e.g., dizziness, numbness, tingling, balance problems), restless leg syndrome, heel/foot pain, and impaired memory and concentration, and exercise intolerance.
Factors Known to Exacerbate Symptoms:
Noise, cold temperatures, weather changes (specifically barometric changes as opposed to temperature changes), stress, and too much or too little physical activity.
Matallana has come a long way since fibromyalgia (FM) brought a curtain down on her former life. What was a promising career as a partner at a prestigious southern Californian advertising firm disappeared abruptly. Friends, family, job. They all went.
It was after a routine surgery for endometriosis that Matallana developed hypersensitivity to pain that made her skin “burn like a blow torch” when anything touched it. She spent the following two years bedridden while she saw 37 physicians in 1995 alone. Finally someone spotted the problem and diagnosed FM.
“Fibromyalgia is excruciatingly painful,” said researcher, clinician and assistant professor at Oregon Health and Sciences University (OHSU) in Portland, Kim Dupree Jones, R.N., Ph.D., F.N.P. “A pathophysiological phenomenon in the brain and spinal cord takes place in which the chemicals in the spinal cord change and the blood flow to the brain is altered. Patients become hypersensitive to noise, temperature and touch. It’s like turning the volume way up on an amplifier.”
An estimated 12 million Americans have FM, and women are eight to 10 times more likely to contract the disease than men. Still, there was very little research money available for fibromyalgia until the mid-1990s. According to a 2003 Newsweek article, when “Muhammad Yumus M.D. of the University of Illinois began studying the disease in 1977, colleagues warned him, ‘you’ll ruin your career. These women are just crazy.’”
OHSU had one of the world’s first fibromyalgia-focused interdisciplinary research and clinical teams. Founded in 1979 by professor of medicine Robert Bennett M.D, the group now includes scientists and clinicians in several disciplines: Rheumatology, nursing, physical and occupational therapy, exercise physiology, psychology and endocrinology. Because the OHSU team distinguished itself as leaders in the FM community, the National Institutes of Health awarded OHSU the first federally-funded study on fibromyalgia in the early 1990s.
|At a Glance:|
|Read more about Kim Dupree Jones, R.N., Ph.D., F.N.P. and her fibromyalgia studies|
OHSU’s Dupree Jones said that despite advances in the understanding and treatment of FM over the past decade, some physicians are still operating under antiquated assumptions. Thus, she suggests patients who suspect they might have the problem check out the OHSU Web site on FM first. “They should just take our handout to the physician,” Dupree Jones said. “Then the patient will know what drugs to ask for. We have about 25 different drugs we’re using in fibromyalgia, but since each patient has distinctive symptoms, we have to work a little harder to find the right medications and combinations for treatment.”
Getting relief from the symptoms of FM via individually tailored medication regimes allows people who suffer from the disease relief from the severe exhaustion and pain that interferes with exercise and other therapies known to help the problem.
As Matallana who started the National Fibromyalgia Association in 1997 said, “Patients used to go for decades without diagnosis or treatment.”
Seattle rheumatologist Andrew Holmann, M.D. concurs. “It’s a new day in fibromyalgia,” he said. “We’re starting to win the battle.”