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Chronic Pain

Juvenile Fibromyalgia

Time lost waiting for improvement.

Juvenile fibromyalgia is, well, fibromyalgia: a chronic non-inflammatory musculoskeletal pain condition characterized by widespread pain and multiple tender points. Unfortunately, families of children affected by this chronic pain syndrome often fall into a pattern of doctor shopping, as they are repeatedly told that a diagnosis is not evident, which is not surprising in light of the unremarkable diagnostic tests and vague chronic pain complaints.

While the etiology of juvenile fibromyalgia is yet to be confirmed, it appears to be related to a defect in the pain regulatory process: For example, an otherwise trivial noxious stimulus for normal juveniles becomes an intensely painful experience for the juvenile fibromyalgia sufferer, leading to years of pain.

There are many theories, among them hypersensitivity among the nociceptor fibers in the spinal cord, leading to the pathological difference in the experience of pain. Genetics have been hypothesized to play a role, as have environmental factors-including anxiety and depression.

And anxiety and depression may worsen due to the impact juvenile fibromyalgia has on the daily lives of these patients, as studies have found that juvenile fibromyalgia patients are more socially isolated and have inferior family relationships compared to normal patients. Interestingly, mothers of juvenile fibromyalgia patients are five times more likely to suffer fibromyalgia; this compounds already problematic intra-family coping.

Treatments include education, including an emphasis on the importance of sleep, and the necessity of appropriate physical activity. If necessary, prescriptions for sleep and psychological afflictions, headaches and irritable bowel symptoms can be given with sometimes great effect. Nevertheless, the chief complaint that brings so many to the doctor's office, pain, is often refractory to medications---and many other interventions.

Unfortunately, the stigma of psychological "problems" haunts children just as it does adults; however, it is usually the parent who frets about the stigma-imaginary or otherwise-affecting the child: An unneeded instance of vicarious health care prejudice. Nonetheless, this should not stop parents from seeking the potential benefit of cognitive behavioral therapy: Adults and children alike often feel empowered by the coping skills and distraction techniques that can provide significant relief from pain.

Relaxation training, activity pacing, calming statements and problem solving can all provide relief, with one study demonstrating an almost-40% decline in functional disability scores. Another study compared eight weeks of cognitive behavioral therapy to eight weeks of one-on-one therapist-administered fibromyalgia education: Again, there was an approximately 40% decline in functional disability scores at the six-month follow-up visit, versus a 10% improvement seen in those patients who were only given education.

True, the reduction in pain is not overwhelming after cognitive behavioral therapy; still, this treatment is able to improve functioning and increase activity without any increase in pain. The lesson here is to have the child "do" life, and not just wishfully wait for the pain to improve before doing so. Otherwise, time-and life---is lost waiting for a wish, which ironically may never be fulfilled if the fibromyalgia patient does not live life as if that wish were irrelevant.

Improvement in juvenile fibromyalgia begins with health care providers and patients displaying the willingness to confront chronic pain and its ramifications. Once that step is taken, a great distance has been traversed.

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