Aims: To: (1) describe the characteristic features of fibromyalgia syndrome (FS) in a pediatric population, (2) note similarities and differences with FS in adults, and (3) ascertain outcome following treatment.

Methods: The Pediatric Rheumatology Clinic at the University of Rochester Medical Center is staffed by 2 pediatric rheumatologists and serves as a regional subspecialty referral service with approximately 450 annual patient visits of whom 120 are initial evaluations. All medical records of patients seen from 1989 through 1995 were reviewed to identify those diagnosed with FS. A standardized data collection form was developed and used to abstract information relevant to FS from these selected medical records. Structured telephone interviews were then carried out to ascertain current(compared to past) status and response to treatment.

Results: Forty-five subjects were identified (41 female, 42 white, mean age 13.3 years) of whom 33 were available for telephone interview at a mean of 2.6 years from initial diagnosis (0.3-7.5 years). Those not reached by telephone did not differ by age, gender or time since diagnosis. As documented in the medical record, out of a possible 15 symptoms associated with FS, subjects reported a mean of 8 with over 90% experiencing diffuse pain and sleep disturbance. Less common were: headaches (71%), general fatigue(62%) and morning stiffness (53%). The mean cumulative number of tender points summed over all visits was 9.7 (out of 18). Telephone interviews reported increases over time in some symptoms but overall improvement in most patients, with a mean positive change of 4.8 on a 1 to 10 rating scale comparing current status to worst ever condition.

Conclusions: FS in patients referred to a pediatric rheumatology clinic was characterized by diffuse pain and sleep disturbance, the latter being more common than in adults. The mean number of tender points, even summed over all visits, was less than the criterion of 11 established for adults, and the majority of patients improved over 2-3 years of follow-up. Revision of the criteria for FS in adults may better suit the diagnosis in younger patients, and the outcome in children is likely to be favorable.