Chronically misunderstood: Sufferers of fibromyalgia try to solve the mystery together Tuesday, July 1, 2003 By BETH FRANCIS The stories swapped around the table in the small conference room at the Collier County Library's Naples branch at 1 p.m. every Thursday are accounts of debilitating pain and feeling misunderstood. But there are also stories of hope, as members exchange encouragement and advice for dealing with the illness they all face — fibromyalgia. Steve Wodzinski stretches at his home on a Monday morning in Naples. Stretching is a daily ritual for Wodzinski to alleviate the pain of fibromyalgia. The chronic pain illness is as difficult to diagnose as it is to pronounce (fi-bro-my-al-ja). It is invisible in that there are no outward signs and elusive because there is no pat blood or imaging test to diagnose it. There is no known cause or cure. It wasn't until 1990 that the American College of Rheumatology established diagnostic criteria for fibromyalgia, also referred to as FM. "This is new paradigm for medicine, and it takes a while for it to be accepted," said Lynne Matallana, executive director of the National Fibromyalgia Association, based in Orange, Calif. "The need for awareness persists, as many doctors are inadequately educated about this mysterious and complex disease and how to do the examination to diagnose it. The research is proving it is a true physiological illness, as opposed to being a psychological problem." Matallana, who founded the Fibromyalgia Association in 1997, said support groups like the one in Naples are popping up all over the country, another sign the illness is getting more respect. Licensed mental health counselor Ginny Kalter said she and her partner psychologist Lori Chang decided to start the Naples support group when they saw more and more patients with the illness. To save time between stretching and getting ready for work, Steve Wodzinski finishes his daily stretches as he brushes his teeth. Learning to live with a chronic illness challenges a person emotionally, so emotional support is invaluable, Kalter said. People with fibromyalgia can tend to become isolated, but attending a support group is a proactive thing they can do to share information and have their own experience validated," Kalter said. Steve Wodzinski, a member of the Naples support group, said it took him more than two years to get the proper diagnosis. Two years may seem long, but Mattallana said it takes most patients an average of five years to get diagnosed. "I was in so much pain, I couldn't lift a can of Coke," Wodzinski told the group on a recent Thursday. "My doctors sent me for a psychological evaluation. I think most of us have stories of doctors telling us it's all in our heads." Another support group member, Diane McCormack said it can be infuriating to be in so much pain, but not look sick. "People are looking at you and they can't see anything wrong with you, so they think you're exaggerating," she said. Wodzinski drinks a supplement to help increase his energy in the morning before leaving for work. Wodzinski shared with the group a recent Newsweek magazine article on FM. "It's great to see fibromyalgia featured on the cover of a national publication; it's more proof fibromyalgia is finally being recognized," Wodzinski said. "One of the big points the article makes is that once you finally have your diagnosis, you find there is hope for managing this illness. It may not be life-threatening, but it is life-altering." Wodzinski, 33, told the group he was once bedridden, but now he's holding down a job as a counselor at AAA Counseling Services in Naples. He said he takes a multi-faceted approach to treating his illness. He stretches for about an hour every morning and does low-impact exercises in the pool where he lives. He goes for regular myofascial release massages to loosen his body's connective tissue. He takes medicine for pain when he has a bad flare-up. While the underlying cause of FM remains a mystery, the onset is often triggered by an illness or injury that causes trauma to the body. In Wodzinski's case, he had a weight-lifting injury to his shoulders and back. Those are areas where he still has lots of pain today. He sometimes wears a thermal patch on his back to relieve pain. Although people with FM have different symptoms, with pain in different places, there are commonalties. The pain of FM is profound, described as deep muscular aching, throbbing, twitching, stabbing and shooting pain. Neurological complaints such as numbness, tingling and burning are often present, adding to the discomfort. People with FM usually have trouble sleeping. Other symptoms include irritable bowel and bladder, headaches, restless leg syndrome (in which the leg twitches involuntarily), impaired concentration, anxiety and depression. FM, which affects between 8 and 10 million people in the United States, is diagnosed using a manual tender point examination. A doctor applies pressure to 18 specified tender points on the body. If the patient experiences pain when pressure is applied to at least 11 of those points, and the pain has persisted for more than three months, FM is diagnosed. "The idea is that there is pain amplification, and the pain is widespread throughout the body," Matallana said. "In a person with fibromyalgia, their brain recognizes more pain than the brain of a person who doesn't have this disorder." Different treatments work for different people, she said. An important aspect of pain management is a regular program of gentle exercise and stretching, which helps maintain muscle tone and reduces pain and stiffness. Various pain medications can be prescribed. Matallana takes Ultracet, a non-narcotic pain medicine. Other medications, such as anti-depressants, muscle relaxers, anti-anxiety and sleep medicines can be helpful. Many people find psychotherapy helpful. Other therapies include physical therapy, yoga, acupuncture, therapeutic massage, exercising in water, light aerobics, relaxation exercises, breathing techniques, biofeedback, application of heat or cold, nutritional supplements and osteopathic or chiropractic manipulation. Matallana, who has fibromyalgia herself, said having a good attitude is also important when battling the baffling illness. "I've had to learn to function through my pain," she said. "If you aren't focusing on your pain, you can do more than you thought. I encourage people to do things that feed their souls. Do things that make you happy. Listen to your favorite songs or take a walk in the park instead of curling up in the fetal position in your bed." Wodzinski said he's learned that he's better off if he keeps moving — as long as he paces himself. "If you just sit on the couch all depressed, your muscles begin to atrophy and it just feeds the pain cycle," he said. Overcoming fibromyalgia has brought its gifts to Wodzinski, he said. "I think its allowed me to grow as a person," Wodzinski said. "I have a lot of gratitude for the things I can do that I wasn't able to do when I was bedridden, things like being able to chew without pain or take a walk. It makes you feel better about yourself to feel like you can get through this."