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I'm too tired." These words became something like a tape-recorded announcement, a constant response from my 13-year-old daughter. But when this bright, popular girl could not get out of bed in the morning to go to school, I knew something was really wrong. Thus began our search, from doctor to doctor, therapist to therapist, and website to website. And even now the three-year struggle continues as Trisha and I seek what works for her while trying to unravel the mystery of fibromyalgia syndrome (FMS).
What Is FMS?
The word fibromyalgia is a combination of the Latin root words "fibro" (connective tissue fibers), "my" (muscle), "al" (pain), and "gia" (condition of). Rheumatologists claim it as their own because it is characterized by chronic, achy muscular pain that has no obvious physical cause. Because studies report no clinical differentiation between chronic fatigue immune dysfunction syndrome (CFIDS) and FMS, they are often referred to as one syndrome, CFIDS/FMS.
Trisha knows fibromyalgia as a feeling, "like having a chronic flu," and pain at tender points that can be felt as lumps in all four body quadrants. It is accompanied by insomnia, and with nonrestorative rapid eye movement (REM) sleep, which results in depression and "fibrofog" - a complex cognitive deficit that involves memory loss and the inability to concentrate. And there's also the constant, debilitating fatigue.
Psychological Implications
Part of the battle with fibromyalgia is in being properly diagnosed. Despite the fact that the World Health Organization (WHO) officially recognized FMS as a legitimate disease in 1993, patients are often told that the symptoms are psychosomatic. For youngsters this can be especially traumatic. If told by authority figures they are not really ill, youngsters learn not to trust how their bodies really feel. Even with a diagnosis, children face the thorny task of learning what it means to have a chronic illness, of waking up in the morning wondering if they will ever feel well again. Or, as Trisha, at the tender age of 13, said, "If all my friends are out having fun, why can't I? Why me?"
Symptom Management
There is no cure for fibromyalgia. At present, medical management addresses FMS symptoms. Trisha obtains some pain relief from massage therapy and acupuncture. While her rheumatologist touted Ambien-induced sleep as a groundbreaking symptom reducer, this medication does not always work for Trisha. In fact, many times after taking Ambien, Trisha becomes too tired to fall asleep.
Rehab for Fatigue
People with FMS have good days and bad days. There is a temptation for young people with FMS to overdo it when they are feeling a little better. Richard Bruno, MD, director of the Post-Polio Institute at Englewood Hospital and Medical Center, Englewood, NJ, calls it the roller-coaster style work-crash, work-crash pattern.
At the Post-Polio Institute, the Kids Chronic Fatigue Management Program uses rehabilitation/behavior management to treat young people with chronic fatigue. The program includes physical and occupational therapy, stress management techniques, and dietary management.
For two weeks, young people complete daily logs of their activities and list on a 20-point scale how much physical and mental exertion each activity required. The logs show that youngsters experience exhaustion after mental activities - like tests, activities of daily living, such as getting dressed, or physical activities, such as walking to class. Helping young people learn how to divide activities over several days and how to build rest into their busy days is indispensable for Trisha and others with FMS.
Getting the Word Out
Knowing that she is not alone, not the only young person with FMS, has been helpful for Trisha. Support for individuals like her can come from various sources, including the Internet, associations such as the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, and hospital-sponsored support groups.
Also, the fact that people with this chronic illness can look fine necessitates education, especially of healthcare professionals called to assess, diagnose, and provide patients with tools to manage their symptoms. Getting the word out is one step toward helping Trisha and others with FMS obtain the care they need.