NEW YORK – An intensive program that includes physical, occupational, and psychological therapy can help most children suffering from pain amplification syndrome to become fully functional within the first 1-2 weeks of treatment and pain free within the first month, according to Dr. David D. Sherry, who spoke at a meeting sponsored by the New York University. The improvements tend to be durable and relapses resolve quickly, often through self care.
A very painful medical condition, amplified musculoskeletal pain or reflex neurovascular dystrophy (RND) usually affects a limb but can cause pain anywhere on the body. Some children have pain all over and a few have intermittent attacks of pain. "The pain these children experience, however, is much more intense than one would normally expect because the pain signal is amplified," according to Dr. Sherry, chief of the rheumatology section at the Children’s Hospital of Philadelphia.
Dr. Sherry described several of the 1,900 cases he has seen in his practice, among them a 12-year-old girl who had banged her foot during basketball. Her foot was cold and blue 3 days later, she could not wear a sock, and she was on crutches. Another 12-year-old patient had fallen at school; in the 2 years since, she had been unable to sit because of pain in her buttocks. A third case was a 14-year-old girl with widespread pain of unknown origin, many positive findings in a review of systems, and multiple painful points, who has not attended school for 2 years. "Remember, all of these children are suffering," noted Dr. Sherry.
Dr. Sherry’s typical RND patient is female, about 12 years old, and has had symptoms for about a year. These girls tend to have pain in their lower extremities and most say the pain is constant and in multiple sites. The pain often begins after minor trauma, is worse with rest, and increases over time. Patients often have allodynia, but the area of allodynia characteristically has variable borders. Some patients have autonomic signs, such as limbs that are cold, clammy, and cyanotic and dystrophic skin. Lab tests are normal although MRI may show edema.
"Some of these kids tend to have multiple diagnoses of stress fractures," says Dr. Sherry. They have overt signs of autonomic dysfunction so the patients and families do not accept that it is "all in the patient’s head."
Nevertheless psychological stress seems to play a role in at least 80% of children with RND. The most common stresses seen in children with RND involve family and school issues. Dr. Sherry reported there being some common personality features in affected children. For instance, the typical patient is "pseudomature," excels in school and sports, and strives to please people and be a perfectionist. Often the patient and her mother seem overly enmeshed with each other, as manifested by "finishing each other’s sentences" or dressing alike. The fathers are often detached. An odd characteristic is an incongruent affect: "amplified pain tends to make the patient smile," says Dr. Sherry.
To break the cycle of pain, the first thing Dr. Sherry recommends is to halt all medical testing and discontinue medications. Depending on the severity of the problem, he then advocates a specialized strenuous program of exercise. During a typical day, the child may participate in pool activities, physical therapy (animal walks, 90-foot runs, step-ups, mini-trampoline jumping, ball exercises), and occupational therapy (stepping in and out of a bathtub, getting up and down from the floor, window painting, writing). Music therapy provides methods of coping, including music-assisted relaxation techniques; and songwriting allows self-expression. Patients also meet with psychologists for counseling sessions. Art therapy is also used to try to help the children connect to their feelings.
While some patients are able to do this at home, most children need daily outpatient therapy lasting 5 to 6 hours a day. "A few children require hospitalization, especially those who are severely incapacitated, those who have marked pain behaviors such as night time screaming and those who need a behavior-modification program." During this time, most children begin to regain function although pain may initially increase because of all the exercise.
The average child requires 2-4 weeks of this exercise program. Physical therapists also use towel and lotion rubs and massage to desensitize areas that are particularly painful to touch. Patients are expected to exercise at home on weekends. During this time, participants do not attend school. Parents are not allowed in the gyms; they are encouraged to participate in parent counseling groups and maintain their normal routines.