Children, adolescents, and young adults diagnosed with juvenile fibromyalgia show persistent symptoms, with lower prevalence of musculoskeletal pain over time yet worsened well-being, according to a large study.
The findings also revealed moderate to severe pain, which was worsened by stress, physical activity, and weather changes.
The research, “Demographic, clinical, and treatment characteristics of the juvenile primary fibromyalgia syndrome cohort enrolled in the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry,” appeared in the journal Pediatric Rheumatology.
Studies of juvenile fibromyalgia have been conducted in small samples, almost exclusively with female patients. Also, criteria for its diagnosis are not uniform, and knowledge of outcomes and effective treatments remains scarce, which leads to significant variability in clinical practice.
The scientists addressed these gaps, as well as whether symptoms and functioning change over time, by using data from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Legacy Registry, which includes more than 9,000 youth with rheumatic diseases across 50 clinical sites in North America.
Besides information such as date of symptom onset and of the first visit to a pediatric rheumatologist, the scientists also assessed common symptoms present before study start, including musculoskeletal pain, headaches, numbness and tingling of the extremities, sleep disturbances, and pain with physical activity, weather changes, anxiety, or stress.
Pharmacological and non-pharmacological therapies were also assessed, as were the treatments recommended or provided at the baseline visit by a pediatric rheumatologist. These could include education about chronic pain and sleep hygiene, graduated aerobic exercise, pain medications, physical therapy, and cognitive behavioral therapy.
Participants age 10 and older rated their pain using a numeric rating scale, while all patients/caregivers completed the Childhood Health Assessment Questionnaire to evaluate the impact of fibromyalgia on daily functioning. This includes dressing, grooming, arising, eating, walking, hygiene, reach, and grip. Patients or caregivers also completed two scales to assess health status.
The analysis included 201 patients (168 females) with juvenile primary fibromyalgia syndrome, all enrolled between 2010 and 2014 at 23 sites. Most were Caucasian (85%) and non-Hispanic (83%). Their mean age at baseline was 15.4 years, range 9–20 years. Thirty-six patients (18%) had a family history of fibromyalgia.
They reported having symptoms for a mean of 1.7 years, up to 11.8 years. Greater household income was significantly associated with a shorter time between reported symptom onset and appointment with a pediatric rheumatologist.
The most frequently reported symptoms were widespread musculoskeletal pain (91%), fatigue (84%), impaired sleep (82%), and headaches (68%). Most patients also reported aggravated pain with stress (80%), physical activity (75%), and weather changes (61%). Numbness/tingling was more commonly reported by females than males (36% vs. 13%). No other sex or age difference was found.
The most common medications were non-steroidal anti-inflammatory drugs (27%), while opioids were the least used (4%). More males used GABA agonists than females (26% vs. 8%).
Most patients (67%) reported no prior use of the listed non-pharmacologic approaches. Among those who did, the most common option was physical therapy (21%). Older age was associated with using strategies including meditation, hypnosis, and yoga. The only sex difference was the more common use of herbal remedies by males than females (22% vs. 7%).
Pain intensity at baseline was moderate to severe. In turn, scores of functional disability and well-being indicated mild to moderate impairment. Males showed worse daily functioning and health-related quality of life than females.
As for treatment recommendations, most clinicians (92%) reported doing education about chronic pain, but education on sleep hygiene (70%) and advice on starting graduated aerobic exercise (76%) were also common. Medications were recommended to nearly half the patients (51%).
Regarding referrals, the most common were to physical therapy (57%), general counseling (53%), and a pediatric or general pain clinic (46%).
Sixty-six patients (82% females) returned for a follow-up visit after a maximum of 2.5 years. Most patients/parents (68%) reported doing most or all of the treatments recommended. The most frequent reasons for not pursuing recommendations included disinterest (16%) and lack of insurance coverage (8%).
The likelihood of reporting widespread pain reduced over time, but other symptoms remained constant. Indicators of function and well-being either worsened or remained relatively unchanged. Males showed more pronounced worsening of subjective well-being than females.
“Overall, the current study further establishes that the main symptoms of JPFS are persistent and moderately disabling for many youth, with a subset of patients having minimal improvement,” the team said.
Future studies should further explore gender differences, identify barriers to timely diagnosis, and find effective treatments for patients with juvenile fibromyalgia, the researchers said.