Teenagers With Fibromyalgia Unlikely to 'Outgrow' the Pain

Janis C. Kelly

February 28, 2014

A prospective longitudinal study of adolescents with juvenile-onset fibromyalgia (JFM) showed that more than 80% continued to have symptoms into adulthood and that 51.1% met American College of Rheumatology criteria for adult fibromyalgia (FM) within 6 years, at a mean age of 21 years.

At follow-up, patients with juvenile FM had more pain, worse physical function, more anxiety, more depression, and more medical visits than age- and sex-matched control patients (P < .01 for all comparisons), Susmita Kashikar-Zuck, PhD, and colleagues report in an article published online February 24 in Pediatrics.

"Although we expected that many patients with [JFM] would continue to have symptoms, we did not expect to find that as many as half of them would meet full criteria for [FM] in adulthood and only a very small number (15%) would be pain-free," Dr. Kashikar-Zuck, who is professor of pediatrics at Cincinnati Children's Hospital Medical Center in Ohio, told Medscape Medical News. "The good news is that [FM] was not associated with any additional medical complications over time, and many of the patients, despite their symptoms, were able to function quite well in their daily lives."

The study included 94 patients initially seen at a pediatric rheumatology clinic and 33 age- and sex-matched healthy control patients. At about 6 years' follow-up, all participants underwent a standard in-person tender-point examination and completed an online questionnaire that included demographic characteristics, pain, physical functioning, mood, and healthcare use. The researchers used a variety of validated tools to assess symptoms, including the 11-point Brief Pain Inventory, the Widespread Pain Index (which includes 19 body areas), the Beck Anxiety Index, the Beck Depression Index, and the 36-item Short-Form Health Survey.

At follow-up, only 14 of the 94 JFM patients were pain-free and not taking FM medications. FM was still active in 48 JFM patients, and another 46 patients had symptoms but did not meet diagnostic criteria for adult FM and were classified as "subclinical FM."

Compared with control subjects, JFM patients had higher Brief Pain Inventory pain scores (3.79 vs 0.88; 95% confidence interval [CI], 0.94 - 1.80; P < .001). JFM patients also reported more pain locations (3.80 vs 1.21; 95% CI, 1.87 - 5.24; P < .001).

General health and emotional role scores on the Short-Form Health Survey were notably worse for JFM patients than for controls. General health scores were 35.09 vs 51.63 (95% CI, 1.35 - 1.26; P < .001), and emotional role scores were 40.91 vs 48.34 (95% CI, 0.19 - 0.99; P < .01). Beck Anxiety Inventory scores were 20.86 for JFM patients vs 9.58 for controls (95% CI, 0.58 - 1.41; P < .001). Beck Depression Inventory Scores were 15.05 vs 9.19 (95% CI, 0.44 - 1.26; P < .001).

As might be expected from these differences, JFM patients also had significantly more outpatient visits within the past year (11.58 vs 6.09; 95% CI, 1.24 - 2.90; P < .01) and used significantly more current medications (1.40 vs 0.33; 95% CI, 2.03 - 8.76; P < .001).

Marital status was “married/divorced/separated” for 22.3% of JFM patients vs 9.1% of control patients, and only 61.7% of JFM patients vs 75.8% of control patients reported "some college/bachelor’s/graduate degree."

"Although some progress has been made in the recognition and treatment of JFM, very little is known about long-term prognosis," the authors write. "Physicians often reassure their patients (with little scientific evidence) that they will likely 'outgrow' symptoms.... Pediatric primary care providers and specialists are therefore unable to provide adequate patient education regarding planning for medical care and psychosocial support as these patients begin to make the crucial life decisions typical of early adulthood (eg, establishing independence from their families, planning for college)."

The authors add that "persistent widespread musculoskeletal pain in childhood and adolescence lasting >3 months and requiring medical attention may signal the onset of a chronic pain disorder and should be taken seriously."

"The first thing I would advise pediatricians is to recognize that when a teenager is experiencing symptoms of muscle and joint pains, sleep problems, and a great deal of fatigue over many weeks/months, and they do not have a disease (such as arthritis) that can explain these symptoms, they should consider the possibility of [FM]," Dr. Kashikar-Zuck said.

"Another thing I would tell pediatricians is that although these patients may present as anxious and distressed, they should not interpret the condition as being 'purely psychological' in origin because this only exacerbates the distress of patients and their parents," he continued. "Parents should be told that the doctor recognizes their child's pain and suffering is real and they should be reassured that JFM is not associated with serious medical complications. However, they should encourage the families to seek multidisciplinary pain management treatment without delay because this treatment will include teaching the family the right coping skills and lifestyle changes and incorporate a physical exercise program that can really help manage symptoms."

"I think this is very much in agreement with lots of studies showing that children with pain are at very high risk of having chronic pain as adults," Daniel Clauw, MD, told Medscape Medical News. "The notion that childhood pain syndromes are benign and typically resolve is simply wrong. We need to view pediatric pain conditions as the beginning of a lifetime disease, and thus an opportunity to intervene earlier, to prevent progression and disability." Dr. Clauw, who was not involved in the study, is a professor of anesthesiology, medicine (rheumatology), and psychiatry at the University of Michigan, Ann Arbor. He also serves as director of the Chronic Pain and Fatigue Research Center.

FM expert Shumpei Yokota, MD, PhD, chairman and professor of the Department of Pediatrics at Yokohama City University School of Medicine in Japan, agreed that the study provided valuable information on the prognosis and natural course of patients with JFM. However, Dr. Yokota, who was not involved in the study, raised the concern that it provided no information about how the patients with JFM had been treated during the 6 years of follow-up.

The authors, Dr. Clauw, and Dr. Yokota have disclosed no relevant financial relationships.

Pediatrics. Published online February 24, 2014. Abstract

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