“Be Aware! Be Active!” is the theme for this year’s National Fibromyalgia Awareness Day Thursday, May 12th.
Spearheaded by the National Fibromyalgia Association, the campaign seeks to raise public awareness and address the role activity plays in alleviating pain and other symptoms of the condition, according to Lynne Matallana, National Fibromyalgia Association president and co- founder.
Affecting more than ten million Americans, fibromyalgia is characterized by fatigue and widespread aching and stiffness in muscles and soft tissues.
Fibromyalgia has no known cause and there are no blood or x-ray tests to diagnose it, according to the American College of Rheumatology.
Doctors rely on patient description of chronic pain and a manual examination of the tender points, such as the neck, elbows, lower back and hip area, associated with the syndrome.
The American College of Rheumatology set the stage for credibility for fibromyalgia when it established diagnosis criteria for it in 1990.
Earlier, doctors often misdiagnosed the condition or proclaimed it “psychosomatic,” according to Corine Walson, National Fibromyalgia Association director of public relations and marketing.
She adds that it still takes an average of two to five years for a person to receive an accurate diagnosis.
Matallana knows firsthand how disheartening that can be.
She went to 37 doctors and was bedridden for two years before finally being diagnosed with fibromyalgia in 1995. Matallana and her co-founder Karen Lee Richards, also diagnosed with fibromyalgia, realized there wasn’t a lot of information on the disorder and many doctors dismissed their patients’ complaints as being in their head.
“Doctors became skeptical when I kept going in with a long list of symptoms,” Matallana says.
The two formed the National Fibromyalgia Association in 1997 to let the media know that women and men were being dismissed in the medical community, and to educate the public and the medical field.
Since that time, the nonprofit association has provided doctors with information from the patient’s perspective.
The association talks to millions of fibromyalgia sufferers a year and also publishes a national magazine that provides readers with the latest news in research and helpful information on health and well-being.
There is no cure for fibromyalgia and Matallana says that rheumatologists are most educated about the condition at this time.
For Matallana, help came with a comprehensive plan.
“I started with physical activity, doing yoga stretches in bed,” she says. “I took some pain and sleep medication and got help with nutrition.
“It was a slow, continuous process of improving and building health.”
Activity was already a part of Shauna Harrison’s life, a Pilates instructor at a gym in Santa Monica and a graduate student with a public health major.
After being tested numerous times and told she was fine, she persisted with tests until she was finally diagnosed almost three months ago.
“People think you’re a hypochondriac. It’s very relieving on a mental level but because fitness is such a huge part of my life it’s very scary,” Harrison says.
“You know your body best and if you’re not being heard, don’t be afraid to speak up and follow what you believe,” she adds.
To get the word out and raise money in honor of Fibromyalgia Awareness Day, Harrison will conduct a free one-hour Pilates class at 10:15 a.m. Saturday, May 7th, at 12100 Olympic Blvd., West Los Angeles.
Fibromyalgia literature will be available and donations will be accepted.
Information, Harrison, email@example.com
Activity also helped Sarah Bates ease her pain.
Now a yoga teacher in Santa Monica, Bates began yoga classes at a time when her fibromyalgia wasn’t bothering her. When she stopped practicing yoga, she became disabled.
She returned to yoga for help and gradually reduced the pain.
“As long as I practice yoga the flare-ups I get don’t disable me,” Bates says.
She now shares her knowledge by teaching yoga to fibromyalgia patients every Saturday at the YWCA in Santa Monica.
She will give a free yoga presentation from 2 p.m. to 4 p.m. Saturday, May 14th, at Santa Monica Hospital, 1250 16th St., Santa Monica, for the fibromyalgia support group that meets there.
Information, sarah@down warddogproductions.net
Bates says many patients feel discouraged and get a passive attitude when doctors and family discount their condition, but yoga can empower patients.
“Yoga is something I can do for myself,” she says. “It’s not another pain pill, but constructive action that makes an actual difference.”
Matallana hopes Awareness Day will “let people with fibromyalgia know they’re not alone. There are a lot of people who care and who are looking for answers to help us have a better quality of life.
“The future holds a lot of hope and we won’t have to continue to suffer the way we have in the past.”
Information, National Fibromyalgia Association; www,fmaware.org
Julie Kirst can be reached at firstname.lastname@example.org