The Treatment of Juvenile Fibromyalgia with an Intensive Physical and Psychosocial Program

The Treatment of Juvenile Fibromyalgia with an Intensive Physical and Psychosocial Program

A new Open Source paper published in The Journal of Pediatrics notes that Fibromyalgia is one of the most common amplified pain syndromes in children, occurring in 2%-6% of the pediatric population, and defined as widespread pain lasting at least 3 months and, depending on criteria, associated with between 5 and 11 of 18 trigger points, along with other somatic complaints, such as irritable bowel syndrome, fatigue, unrestorative sleep, and chronic headache. As with adults presenting with fibromyalgia profiles, females predominate at a rate of approximately 4:1, and the disorder also seems to affect Caucasians disproportionately.

The etiology of fibromyalgia is unknown, but some of the factors associated with adults with fibromyalgia include depression, and low pain threshold, cortisol dysregulation, and ischemia. Adult fibromyalgia criteria are applied in diagnosing these children, and consequently, the researchers maintain that other potential etiologies need to be ruled out before a diagnosis can be made, noting that no standard criteria have been established for diagnosis of fibromyalgia in children.

The paper coauthors observe that treatments for childhood fibromyalgia also remain elusive, with the major focus on cognitive behavioral therapy and aerobic training, and that studies of long-term outcomes have reported persistent pain in more than 90 percent of affected children, with sleep disturbance also found in more than 90 percent of 33 children with fibromyalgia surveyed 2.6 years after diagnosis. Additionally, In a large cohort of children with fibromyalgia, more than 80 percent had symptoms that persisted into adulthood, and, compared with controls, experienced more pain, anxiety, and medical visits, along with decreased physical function at 5.9 years after diagnosis.

In adults, evidence-based guidelines stress cognitive behavioral therapy and aerobic training. The coauthors note also that medications have little effective role in treating children with fibromyalgia, and and that systematic reviews in adults are not encouraging on that front either.

The paper describes a research program in which juvenile Fibromyalgia patients were seen and treated at a major tertiary care hospital — The Children’s Hospital of Philadelphia (CHOP) — with five to six hours of intensive PT/OT daily and at least four hours of psychosocial services weekly. All medications the children had been using for fibromyalgia, such as analgesics, antiepileptics, antidepressants, and sleep medications, were discontinued. Thirty-seven subjects (58%) were on pain medication other than acetaminophen or a nonsteroidal anti-inflammatory drug at the time of enrollment. The subjects underwent standardized testing, including a visual analog scale for pain; the Bruininks-Oseretsky Test of Motor Performance, Second Edition; the Bruce treadmill protocol; the Functional Disability Inventory; the Pain Stages of Change Questionnaire, adolescent version; and the Pediatric Quality of Life Inventory, Teen Report, at three time points: at program entry, at the end of the intensive program, and one year after the program’s end.

The research was conducted and the paper entitled The Treatment of Juvenile Fibromyalgia with an Intensive Physical and Psychosocial Program (DOI: is coauthored by David D. Sherry, MD, Jenna L. Tress, CCRP, Jennifer Sherker, PsyD, and Pamela F. Weiss, MD, MSCE of the Division of Rheumatology at The Children’s Hospital of Philadelphia, Pennsylvania (CHOP); Lori Brake, PTA and Katherine Fash, PT, DPT, CSCS of the CHOP Department of Physical Therapy; and Kelly Ferry, MOT, OTR/L of the CHOP Department of Occupational Therapy.

Sixty-four of the 81 children and adolescents with primary fibromyalgia who participated in the CHOP intensive pain program were enrolled (79%). The enrolled subjects and those who were not enrolled did not differ significantly in terms of pain intensity (as measured by the VAS) at program entry. Demographic data, duration of pain, and self-reported comorbid psychiatric diagnoses are presented in Table I. Twenty-three subjects (36%) had a concomitant diagnosis of anxiety, depression, or both.

Before participating in the program, the children were encouraged to do aerobics and, if they had allodynia, to desensitize. The researchers frequently prescribed a formal home exercise program and local physical therapy, although adherence was not formally measured. If the child’s home exercise program was not successful, then the dose of PT/OT was increased. It is these children who are included in this report.

The children were treated either as day hospital patients or inpatients. All children received individualized 1-on-1 therapy for five to six hours per day, with the focus on quickly reestablishing normal function, along with maximizing aerobic conditioning. Activities typically included timed activities (eg, animal walks, stepping in/out of a tub, running up and down stairs, stepping and squatting activity), scooter boards, treadmill, elliptical, stairs, long-distance community ambulation, strengthening and endurance activities, and dance or other video game activities. Treatment goals were set high and quickly advanced as the child progressed through the requirements to a higher level of function and exercise. Children with allodynia received multiple courses of desensitization, including rubbing, local and total body vibration, constant light touch or compression, temperature and noise desensitization, fanning, and exposure to multiple different textures. Desensitization was often incorporated into exercises when possible. Children who experienced pain with eating were often required to eat a minimum of seven meals and snacks per day.

Duration of therapy for each child was individually determined by the treatment team based on physical functioning goals obtained, rate of improvement, and judgment regarding the child’s ability to sustain and further improve on these functional goals in the home environment without formal physical therapy.

All children were off pain medication during the intensive PT/OT program, and none were on pain medication at the one-year follow-up. The investigators say that in their experience, medications in this population lead to side effects and are ineffective, while also perpetuating the sick role by suggesting that reliance on medication is necessary for successful treatment, and that these children are at great risk of overmedication and iatrogenic injury.

Psychosocial support included both one-on-one counciling and group sessions with a psychologist for both cognitive and behavioral therapy-based intervention, as well as support for coping during PT/OT sessions, as indicated. Art therapy and music therapy were also included, for a minimum of four hours per week of psychosocial support. In addition, parent group sessions were held weekly, and family or parent sessions were added when indicated.

Sixty-four children (median age, 16 years; 95% Caucasian; 94% female; median duration of symptoms, 21 months) were studied, and the mean pain score decreased significantly from the time of program entry to the end of the program (diminishing from 66 of 100 to 25 of 100).

At the one-year follow-up, 33 percent reported no pain, and all measures of function on the Bruininks-Oseretsky Test of Motor Performance, Second Edition had improved significantly and remained at that level or continued to improve over the subsequent year. The mean Bruce treadmill protocol time first increased from 588 seconds to 801 seconds (P < .001) and then dropped to 750 seconds (P = .005), which is at the 90th percentile for age and sex. All Pain Stages of Change Questionnaire, adolescent version subset scores improved significantly initially and were stable or improved at 1 year, as did the Pediatric Quality of Life Inventory, Teen Report total score.

The program was focused on desensitization and prolonged aerobics, strengthening, and functional activities individualized to the subjects, and did not inquire about pain or let pain or the fear of pain stop them. The researchers believe that this focus on function rather than pain helps children break the pain cycle and overcome the long-standing functional and pain limitations with which they presented.

Consequently, an important aspect of the CHOP program was emotional support of the child and family. The coauthors note that dealing with pain and the often-long process of seeking diagnosis and appropriate treatment is an arduous process, both physically and emotionally, for children and their families. Psychotherapy focuses on using cognitive behavioral therapy-based interventions to support children through intensive PT/OT, as well as helping them apply these strategies to coping with stress in life outside of program demands that may be contributing to their pain. The researchers observe that many children benefit from cotreatment during PT/OT to help learn and use strategies in vivo.

Group psychotherapy sessions were also used, along with creative arts therapies to help advance socioemotional goals. Psychotherapy recommendations after the intensive program have included individual, family, marital, and other therapy as indicated. The psychological well being of the research sample was significantly improved at the end of one year, as demonstrated by the overall improved quality of life and maintenance of a high level of emotional and social functioning. The researchers’ finding of lower school functioning at program completion than at the one-year follow-up is consistent with their program structure, which recommends that patients do not engage in schoolwork during intensive program treatment. However, school functioning improves over the year postdischarge, likely as children catch up on missed work, and remains at a higher level owing to increased function and decreased pain, as well as improvements in overall coping skills.

The philosophy underlying this program is for the children to treat their own pain while learning the tools for doing so in the treatment program. It is the researchers’ hope that because of this, they will remain fully functional and free of pain in the long term. No studies of this have been conducted to date, but the coauthors suggest that the psychological variables at play may better predict long-term outcomes, and addressing these head-on may reap greater rewards, especially for long-term outcomes.

The coauthors acknowledge that a weakness of this study is that it was not a randomized or controlled trial. Nonetheless, they observe that these children had long-standing pain that did not remit with less-intensive therapy, and that others have reported cohorts of children with fibromyalgia who exhibit minimal improvement up to 6 years post diagnosis. The children in the present study had been significantly disabled and were post-program able to achieve and maintain normal function by both self-report and objective measures over one year. The coauthors speculate that most of these children will have the necessary mental and physical capability to stay well, and if relapses occur, will have the tools to self-reinstitute these measures and resolve any new symptoms, as they have seen in children with complex regional pain syndrome treated with such a program.

Based on the program’s findings, the researchers conclude that children with fibromyalgia can be treated successfully without use of pharmaceutical medications and can regain normal function, achieve remission or marked reduction of pain, and experience increased quality of life with an interdisciplinary approach that uses much more intensive PT/OT than is common in most pain programs, along with cognitive, behavioral, and other psychosocial supports.

The study was funded by The Children’s Hospital of Philadelphia and the Snider Family.

The Journal of Pediatrics
The Children’s Hospital of Philadelphia

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