In the past 2 decades and 1400 children with various forms of amplified musculoskeletal pain, I have seen a wide spectrum of this illness including complex regional pain syndrome, localized and diffuse amplified musculoskeletal pain, and fibromyalgia (a term I eschew). Our interdisciplinary team has developed a successful treatment program. Although having a team is helpful and necessary for some children, an individual practitioner may help many in their own community by paying attention and applying the various elements of our team. The mainstays of therapy are focusing on re-establishing function without medication or the use of modalities and addressing the psychological stress (1). Ultimately it is the child who works through his or her pain. The treatment starts at the first visit with confirming the diagnosis, discontinuing further medical evaluations, stopping medications for pain (these 2 steps are sometimes much harder on the doctor than the child), and giving the child and family a working model of pain amplification to make the pain understandable (2). Confidence in both the diagnosis and treatment is paramount. The treatment is a team effort, although there are many children who, once they know what they have and how to treat it, can work through the pain without a formal intensive therapy program.
The formal intensive program at the Children's Hospital of Philadelphia includes physical therapy, occupational therapy, psychology, music therapy, school evaluation, and nursing, and on average lasts 3 to 4 weeks. Each has a role and each may be more or less important depending on the individual situation. The children receive 5 to 6 hours of one-to-one physical and occupational therapy. This is rigorous and focuses on function and desensitization (most children have allodynia) (3). We focus on doing what the children find the most difficult. We rapidly advance the difficulty of the exercises until they are functioning normally. The psychologist evaluates each child. It is critical that the experience of sitting down and talking about one's feelings is nonthreatening and even an enjoyable experience. When indicated, the psychologist will perform various psychological and educational tests. Music therapy is a place to connect to the body through relaxation with music, deal with sleep issues (we do not treat sleep with medication), and express oneself through music. Frequently this is the child's favorite aspect of the program because it can be the most nonthreatening place to talk about his or her feelings. The school educator receives information from the school about how the child functions academically and socially and helps smooth the reentry to school after the child graduates from the intense program. The second phase of our program is helping the child to maintain normal function, especially going to school, counseling (for most, depending on the evaluation), and doing a home exercise program on his or her own. The school educator, along with the psychologist, will not infrequently assess academic performance, strengths, and weaknesses and make specific school recommendations. The nurse assesses various somatic complaints, such as difficulty breathing, but with the bias that most symptoms are part of the child's tendency to feel emotions through his or her body. Most children fully participate in the program if they develop vomiting, minor illness and injuries, and most other somatic complaints.
It is important that the team is confident in its ability to cure these children, tolerate the child's pain, be genuinely interested in these children, and understand each other's roles and positions because both the child and parents are prone to try to split the team by playing one member off another.
Using this approach we have been successful in curing (ie, total resolution of symptoms) the vast majority of these children (4–6). In our study of complex regional pain syndrome, 95 of 103 were cured (4). The relapse rate was much lower than studies that used drug treatment (4,7); we believe this is, in large part, because our patients did the exercises themselves and thus cured themselves. If we fixed them with special modalities or medications, we fear the tendency would be for them to relapse and make it our job, not theirs, to fix them again. We have treated children with abdominal pain who are incapacitated or had marked allodynia of the abdomen and have been equally successful, although we have no long-term follow-up. Any outcome data should include other stress-related outcome data because we treat numerous children who go on to develop eating disorders, conversion reactions, attempt suicide, and other bodily pains (1,8–10).
These children and their families are rewarding to treat. We can help these children in the short term by helping them work through their pain and reestablish normal function, and we can help these children and their families in the long term by addressing the underlying psychological issues so that they cope with stress in a much more healthy fashion.
1. Sherry DD. Pain syndromes. In: Miller JJI, editor. Adolescent Rheumatology. London: Martin Duntz, Ltd; 1998. pp. 197–227.
2. Sherry DD. An overview of amplified musculoskeletal pain syndromes. J Rheumatol 2000; 27(Suppl 58):44–48.
3. Sherry DD. Amplified Musculoskeletal Pain in Children: Diagnosis and Treatment. A Guide for Physical & Occupational Therapists
(video). Wilmington, DE: Childhood RND Educational Foundation; 2002. www.childhoodrnd.org
. Accessed August 15, 2008.
4. Sherry DD, Wallace CA, Kelley C, et al
. Short- and long-term outcomes of children with complex regional pain syndrome type I treated with exercise therapy. Clin J Pain 1999; 15:218–223.
5. Sherry DD, McGuire T, Mellins E, et al
. Psychosomatic musculoskeletal pain in childhood: clinical and psychological analyses of 100 children. Pediatrics 1991; 88:1093–1099.
6. Sherry DD, Wallace CA. Resolution of fibromyalgia with an intensive exercise program (abstract). Clin Exp Rheumatol 1992; 10:196.
7. Rabinovich CE, Schanberg LE, Stein LD, et al
. A follow up study of pediatric fibromyalgia patients [abstract]. Arthritis Rheum 1990; 33:S146.
8. Jaworowski S, Allen RC, Finkelstein E. Reflex sympathetic dystrophy in a 12-year-old twin with comorbid conversion disorder in both twins. J Paediatr Child Health 1998; 34:581–583.
9. Silber TJ. Anorexia nervosa and reflex sympathetic dystrophy syndrome. Psychosomatics 1989; 30:108–111.
10. Mikkelsson M, Sourander A, Piha J, et al
. Psychiatric symptoms in preadolescents with musculoskeletal pain and fibromyalgia. Pediatrics 1997; 100(2 Pt 1):220–227.