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Fibromyalgia in children and adolescents: Treatment and prognosis overview

Fibromyalgia in children and adolescents: Treatment and prognosis overview
Literature review current through: Jan 2024.
This topic last updated: Jan 12, 2023.

INTRODUCTION — Fibromyalgia is one of a number of chronic pain disorders that are characterized by central sensitization underlying pervasive chronic pain [1,2]. However, the specific etiologic and pathogenic elements of this disorder are not fully understood. Fibromyalgia is characterized by chronic and diffuse musculoskeletal pain, severe fatigue, and nonrestorative sleep. In children, this disorder is often referred to as juvenile primary fibromyalgia syndrome (JPFS) or juvenile fibromyalgia (JFM) [3-6]. (See "Pathogenesis of fibromyalgia".)

A multidisciplinary approach that incorporates physicians, psychologists, and rehabilitation specialists and that offers a combination of pharmacologic, cognitive-behavioral, and physical interventions, along with patient education, is most effective in treating patients with fibromyalgia. A stepwise approach to management is taken, starting with psychologic and physical interventions. Medications may be added, particularly for treating certain aspects of fibromyalgia such as depression and anxiety, sleep disturbances, and pain.

The treatment of fibromyalgia in children and adolescents is reviewed here. The clinical manifestations and diagnosis of fibromyalgia in children and the clinical features, diagnosis, and treatment of the disease in adults are presented separately. (See "Fibromyalgia in children and adolescents: Clinical manifestations and diagnosis" and "Clinical manifestations and diagnosis of fibromyalgia in adults" and "Treatment of fibromyalgia in adults".)

MANAGEMENT APPROACH — Critical elements of treatment include physical exercise [7] and cognitive-behavioral therapy (CBT) to enhance coping strategies and self-regulation of pain [8]. CBT is most effective if combined with an ongoing exercise program [9]. Addition of medications is an option, particularly in patients with difficult-to-control disease, but there is little to no evidence of their usefulness in children and adolescents [10]. Some experts use medications rarely, whereas other use them more routinely (eg, low-dose tricyclic antidepressant as a sleep aid).

In our practice, management of a child with fibromyalgia includes the following:

Confirmation of the diagnosis – Therapy starts with confirmation of the diagnosis by a clinician experienced in treating juvenile primary fibromyalgia. (See "Fibromyalgia in children and adolescents: Clinical manifestations and diagnosis".)

Education – The disease is then reviewed with the patient and family, with a focus on the concept of central sensitization and education that fibromyalgia is a chronic but generally nonprogressive condition. (See 'Education' below.)

Identification and management of comorbidities – If there are other disorders present (eg, depression, restless legs syndrome, sleep apnea, chronic headaches, irritable bowel syndrome, or other causes of musculoskeletal pain such as hypermobility syndrome), these should be identified and treated as well.

Exercise – Low-impact aerobic activities, such as biking, swimming, or water aerobic exercises, are begun and individualized to meet each patient's needs. The level of activities should initially be set at a low level because most patients have become physically deconditioned and many have increased pain and low tolerance for exercise. It is important to emphasize the necessity of doing daily aerobic exercise to achieve the most benefit. A course of physical therapy with gradual cardiovascular fitness training may help children and adolescents to develop the optimal activity regimen. Evidence suggests that more intensive exercise programs are effective when directed by clinicians that have specific expertise in this kind of exercise management [11,12]. (See 'Exercise' below.)

Given the low tolerance for exercise in patients with juvenile fibromyalgia (JFM), some studies have begun to evaluate tailored strength-training exercise programs to improve gait, posture, strength, and balance prior to engaging in aerobic exercise [13,14]. The benefit of such programs is the low-impact nature, which is better-tolerated as a first step towards engaging in more vigorous activity.

Cognitive-behavioral therapy – The patient is provided CBT, ideally by a pediatric health psychologist trained in treating pain [11]. Treatment should include behavioral interventions to establish more adaptive behavioral routines including returning to school, facilitating coping and problem-solving strategies, and learning self-regulatory techniques to improve pain modulation. (See 'Psychologic interventions' below.)

Optional pharmacotherapy – The following pharmacologic interventions may be options for patients who have not responded to the above measures, but, as stated above, there is little direct evidence of their usefulness aside from anecdotal reports:

Antiseizure medications, including gabapentin or pregabalin [15], particularly in patients whose pain is inadequately controlled with or who are intolerant of antidepressants. These agents can be helpful in reducing the pain component of fibromyalgia. (See 'Antiseizure medications' below.)

Selective serotonin reuptake inhibitors (SSRIs), such as fluoxetine (dose of 20 to 80 mg/day), or use of dual selective norepinephrine and serotonin reuptake inhibitors (SNRIs), such as duloxetine (initial dose 30 mg/day; may increase to 60 mg/day) or milnacipran (50 to 100 mg twice a day). SSRIs and SNRIs have been shown in adults to reduce pain as well as depression and anxiety, which are often coexistent. How much of this is applicable to children with fibromyalgia is unclear [16]. There is a boxed warning for SSRIs and SNRIs for children and adolescents because some patients have experienced a worsening of depression with suicidal ideation and behavior. Pediatric patients on these medications should be carefully monitored for this complication. (See 'Antidepressants' below.)

Tricyclic antidepressants, such as amitriptyline or nortriptyline in low doses (10 to 50 mg at bedtime), when difficulty initiating sleep is the primary concern. These agents are also potentially helpful in reducing the symptoms of chronic musculoskeletal pain, headaches, and irritable bowel syndrome [17].

EDUCATION — The initial and sometimes most important therapy for patients with fibromyalgia is to provide them with a diagnosis, education about their illness, and structure for living their life with this chronic, but potentially time-limited, disorder. Simply having an actual diagnosis, after months and sometimes years of symptoms and many doctors' visits without a clear answer, is often reassuring and can help the patient and family in terms of beginning to understand and cope with the illness.

Education and advice on specific areas include the following:

Defining fibromyalgia syndrome – Far too often, patients are told what their condition is not, rather than what it actually is. Helping patients and families understand the science behind central sensitization disorders is a critical first step in treatment. This is also an opportunity to help them understand the close relationship among pervasive pain, sleep, and mood dysregulation, as well as introducing evidence-based treatments. It also may be helpful to differentiate juvenile fibromyalgia (JFM) from the syndrome as it appears in adults. Plasticity in the nervous system of younger patients affords a much more positive prognosis.

Sleep hygiene – Because of the prevalence of sleep disturbances in these children, it is important to establish a routine sleep regimen with regular times for waking and going to bed. Caffeine should be avoided, especially from the late afternoon hours onward. In addition, screens (ie, computer, television, cell phones, and tablet devices) should be avoided in bedrooms since they are associated with shorter sleep duration and potentially with perceived insufficient rest [18].

School attendance – For children who have school attendance issues, efforts should be directed towards a gradual return to attending school on a regular basis. Full-time school attendance with minimal accommodations is the ultimate goal, although, for children with extended absenteeism, the process of achieving this may be a prolonged one that requires collaboration between patient, family, health care providers, and school to assist with reintegration. Behavioral strategies "shaping" return to school through successive approximations is an optimal strategy. As an example, return to school requires arising at a defined time each morning, as well as doing schoolwork for defined intervals at specific times. That is often a significant change from being home all day with no specific schedule. The change is made through incremental shifts so that return to school full time is manageable.

Change in expectations – While it is important that the patient and family maintain hope and optimism, realistic goals will help avoid disappointment and frustration. It is critical to help patients and families understand that this is a chronic condition and that there are no immediate, rapid, short-term interventions that will alleviate the problem, harkening back to the concept that this is a chronic and not acute condition. The goal is to improve functioning, normalize sleep, and address mood and coping first, with improvements in pain coming simultaneously or shortly thereafter. It is also important to set expectations that improvement is rarely linear, but, rather, it is characterized by steady gains as well as occasional setbacks.

EXERCISE — There is strong evidence in adults with fibromyalgia that aerobic exercise has a beneficial effect, resulting in a sense of improved well-being, improved physical functioning, and a reduction in pain. Data show similar outcomes for exercise treatments (aerobic or resistance based) in juvenile primary fibromyalgia [12,19,20]. (See "Treatment of fibromyalgia in adults", section on 'Increasing physical activity and exercise'.)

In one series, 64 children who had failed a home exercise program and local physical therapy were treated as inpatients or in a day hospital for a mean of 23 days with five to six hours per day of individual physical and occupational therapy (PT/OT), as well as a minimum of four hours a week of psychosocial therapy, but no pharmacotherapy [19]. Significant improvements in pain and function were demonstrated in both subjective and objective measures at the end of intensive therapy and one year after completion of the program compared with baseline.

In a small trial, 30 children and adolescents with fibromyalgia were randomly assigned to a 12-week exercise program, aerobics or qigong [12]. Improvements in physical function, symptoms including pain, and quality of life improved in both groups, with greater improvement in physical function, functional capacity, fatigue, and quality of life seen in the aerobics group.

In another small trial, 40 adolescents were randomly assigned to either cognitive-behavior therapy (CBT) only or combined CBT and neuromuscular exercise training [9]. The group that received exercise training in addition to CBT had greater pain reductions at the end of treatment.

PSYCHOLOGIC INTERVENTIONS — Randomized trials and observational studies indicate that cognitive-behavioral therapy (CBT) is effective in reducing functional disability and symptoms of depression in adolescents with juvenile primary fibromyalgia syndrome (JPFS). Clinically, the aim is to improve patient function by using behavioral shifts that target function and pain behavior, along with coping strategies (See "Overview of psychotherapies", section on 'Cognitive and behavioral therapies'.)

The following studies are illustrative:

In a single-blind trial, 114 adolescents with fibromyalgia were randomly assigned to CBT or fibromyalgia education after eight weeks of stable medications [21]. Both groups demonstrated a significant decrease in symptoms of depression and functional disability after eight weeks of therapy and at six-month follow-up, with functional ability improving to a significantly greater degree in the CBT group. A significant decrease in pain was not seen in either group.

In another controlled trial, 30 adolescents with fibromyalgia were randomly assigned to eight weeks of active pain-coping skills training or self-monitoring [22]. Although all patients exhibited lower levels of disability and depressive symptoms after eight weeks than at baseline, those who received coping-skills training were better able to cope with pain than those in the self-monitoring group.

Subjects were then crossed over to the opposite treatment arm for eight weeks and were reevaluated at week 16 of the study. All patients had lower levels of disability and depressive symptoms compared with baseline, but those who received self-monitoring followed by coping-skills training seemed to receive the most benefit.

In one study of 67 children with fibromyalgia, cognitive-behavioral interventions (cognitive restructuring, thought stopping, distraction, relaxation, and self-reward) and patient/parent education (pain management, psychoeducation, sleep hygiene, and activities of daily living) reduced pain, somatic symptoms, anxiety, fatigue, and school absences. The CBT group also showed improved sleep quality and reported improved functional ability in most patients [23].

In a cohort of seven girls with fibromyalgia, cognitive-behavioral techniques (progressive muscle relaxation and guided imagery) reduced pain and facilitated improved function [24].

PHARMACOLOGIC THERAPY — There are no specific data available on the percentage of patients with juvenile fibromyalgia (JFM) who receive pharmacotherapy instead of or in addition to rehabilitative and cognitive-behavioral therapies (CBT). Unfortunately, there is a dearth of comprehensive pediatric pain treatment centers, often leading providers to prescribe medications, even when it is not the optimal, evidence-based treatment. However, agents that have shown beneficial effects in adults have been used in children and are sometimes effective. Medications are used if depression, pain, sleep disturbance, or other associated symptoms are not adequately treated with the other measures discussed above. The following is a summary of agents that have been used in children with fibromyalgia. The most commonly used medications in patients with JFM are an antiseizure medication or an antidepressant, with the choice depending upon the constellation of symptoms and provider and patient/family preference. A more complete discussion on the use of each of these classes of medications in adults with fibromyalgia is found separately. (See "Treatment of fibromyalgia in adults".)

Antidepressants — In a meta-analysis, tricyclic antidepressants (eg, amitriptyline), serotonin-reuptake inhibitors (eg, fluoxetine), and serotonin-norepinephrine-reuptake inhibitors (eg, duloxetine and milnacipran) were shown to be effective in reducing pain (typically 30 to 50 percent reduction in pain intensity) and depression in adults with fibromyalgia [25]. Tricyclic antidepressants were also beneficial in reducing pain and improving sleep. In general, tricyclic antidepressants are effective even at doses below usual antidepressant levels, suggesting that changes in mood alone are not the mechanism by which they work. Duloxetine was approved by the US Food and Drug Administration (FDA) in 2020 for adolescents with fibromyalgia between 13 and 17 years of age based upon a single randomized trial of 184 adolescents [26]. Of note, no significant difference was seen between the duloxetine and placebo groups for the primary outcome of average pain severity. Gastrointestinal symptoms, headache, and suicidal ideation/self-harm were all more common in the duloxetine group compared with placebo. The risk-benefit analysis would lead one to use these medications in a very limited way and under the guidance of a psychiatrist.

Antiseizure medications — In randomized clinical trials, gamma amino-butyric acid (GABA) agonists, such as gabapentin and pregabalin, help reduce pain in adults with fibromyalgia. Both gabapentin and pregabalin [15] are used off label in children and adolescents with fibromyalgia and are effective in reducing pain in some patients; however, a systematic review yielded too few studies to comment on either safety or efficacy of these medications for chronic noncancer pain in pediatrics [10].

Analgesics — Most analgesics, including nonsteroidal antiinflammatory agents and opioids, are ineffective in reducing pain in patients with fibromyalgia. The pain associated with fibromyalgia arises principally from central sensitization and therefore does not respond to opioid therapy. This, combined with the many adverse effects of opioids, as well as concerns for misuse, diversion, and abuse, makes it clear that there is no place for opioids in treating this syndrome [27].

Alternative and complementary medicine — A systematic review of complementary and integrative strategies to address pain in fibromyalgia concluded that there is weak evidence to support the use of traditional Chinese acupuncture in relieving pain in patients with fibromyalgia [28]. However, data in children are limited to one small, observational study of subjects with chronic pain that reported improved discomfort after treatment [29].

A randomized trial of 66 adult patients with fibromyalgia demonstrated greater improvement in the patients who performed tai chi twice a week for 12 weeks compared with those who performed a non-tai chi exercise program [30]. Several trials in adults have shown that meditative movement therapies (qigong, tai chi, and yoga) can decrease sleep disturbances, fatigue, depression, and limitations of health-related quality of life [31]. Further studies that include children are needed.

PROGNOSIS — Little is known about the natural course of juvenile fibromyalgia (JFM) syndrome, especially if left untreated. A number of studies have shown beneficial effects from pharmacologic, psychologic, and physical interventions, but follow-up studies determining the long-term impact of these treatments are limited.

One study of 59 children (mean age at diagnosis 15.5 years) reported follow-up data at a mean duration of 18.3 months after diagnosis [32]. Of the 50 patients available for follow-up, disease severity improved in 30 (60 percent), remained unchanged in 18 (36 percent), and worsened in 2 patients (4 percent) compared with their initial presentation. Thirty-seven patients were still taking medications at the end of the follow-up period. Active exercise was associated with a better outcome. However, another study of 35 children with fibromyalgia reported a poorer outcome as 21 patients (60 percent) had not improved after a mean follow-up of 27 months [33].

Fibromyalgia, like other chronic conditions, may have a significant deleterious effect on quality of life [34]. In a study of 59 children with fibromyalgia, patients self-reported severely impaired physical and psychosocial functioning using the Pediatric Quality of Life (Peds QL) Generic Core Score, PedsQL Multidimensional Fatigue Scale, and PedsQL Rheumatology Module Pain and Hurt Scale. Patients with fibromyalgia reported greater pain and fatigue than pediatric patients with other rheumatologic diseases and more fatigue when compared with children with cancer. These results demonstrate the significant effects this disorder can have on an affected child at a single point in time.

Finally, there is the question of the trajectory of JFM over time. We know very little of the relationship between fibromyalgia in children and the syndrome in adults. Do children with fibromyalgia become adults with fibromyalgia? Do adults with fibromyalgia have a history of the syndrome when they were younger? Retrospective studies with adults tend to be flawed so that specific conclusions regarding antecedent childhood findings cannot be made.

Prospective studies suggest that the majority of children and adolescents diagnosed with JFM continue to experience symptoms into early adulthood. One study reported that approximately 60 percent of 48 young adults diagnosed with JFM in childhood or adolescence continued to experience widespread pain, poor sleep, and fatigue after a mean follow-up of 3.67 years [35]. In another study of 94 patients with JFM and 33 gender-matched healthy controls followed for six years, the former group continued to have physical and emotional impairment into early adulthood [36].

Further investigation of lifespan developmental approaches that focus on underlying mechanisms is needed to determine if there is a relationship between juvenile and adult fibromyalgia and, if so, whether early interventions can alter the progression of this disorder [37].

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Fibromyalgia".)

SUMMARY AND RECOMMENDATIONS

Care team – An interdisciplinary team that offers a combination of educational, cognitive-behavioral, physical, and pharmacologic interventions provides optimal management for the care of children with fibromyalgia.

Management approach – We suggest the following management approach, which is patient centered and initially is focused on psychologic and physical rehabilitative strategies (see 'Management approach' above):

Education – Confirmation of the diagnosis, education about the illness, and structure for living with this chronic disorder. (See 'Education' above.)

Exercise – Regular, low-impact aerobic exercise regimen, gradually increasing in intensity, frequency, and duration. (See 'Exercise' above.)

Cognitive-behavioral therapy (CBT) – CBT, which is effective in reducing functional disability and symptoms of depression in adolescents with fibromyalgia. (See 'Psychologic interventions' above.)

Pharmacotherapy – Medications are often not necessary, particularly in the long term, but are sometimes used to facilitate or augment implementation of the multipronged approach to treatment of fibromyalgia in patients that are more severely affected or to better manage associated sleep or mood symptoms. They are also sometimes used to help facilitate participation in an intensive exercise regimen. However, there is little to no evidence to show that the benefits outweigh the risks in children and adolescents. Medication options include selective serotonin reuptake inhibitors (SSRIs), dual selective norepinephrine and serotonin reuptake inhibitors (SNRIs), low-dose tricyclic antidepressants, and gamma amino-butyric acid (GABA) agonists (eg, gabapentin and pregabalin), with the choice depending upon the constellation of symptoms and provider and patient/family preference. (See 'Pharmacologic therapy' above.)

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Topic 6424 Version 18.0

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