Dr. Susmita Kashikar-Zuck is the Associate Professor of Pediatrics at the Cincinnati Children's Hospital Medical Center in Cincinnati, Ohio. She has many years experience of treating children and teenagers with chronic pain, and is part of the multidisciplinary pain management program at the Cincinnati hospital. Here she speaks with Kathy Longley about juvenile fibromyalgia.
Q. How common is juvenile fibromyalgia?
A. Currently, there are no prevalence studies in the United States, but studies in Finland, Israel and Mexico have found that between 2-6 percent of school-aged children have symptoms of widespread musculoskeletal pain. In pediatric rheumatology clinics, juvenile fibromyalgia is a relatively common problem presented, and forms about eight percent or more of new referrals. In our hospital, we see about 40-45 new juvenile fibromyalgia patients per year. Not all these children require treatment for their symptoms; some naturally get better over time.
Q. Do girls tend to outnumber boys?
A. Yes. Just as fibromyalgia is much more common in adult women, juvenile fibromyalgia is much more common in girls. Over 85 percent of juvenile fibromyalgia patients in our clinics are girls, usually diagnosed in their adolescent years (13-15 years of age). It is currently not clear why fibromyalgia is more common in females; there is some research that shows that there might be a familial—possibly genetic—association in fibromyalgia, with first degree female relatives being the most likely to have symptoms.
Q. How would you diagnose juvenile fibromyalgia?
A. Diagnosing juvenile fibromyalgia is very similar to diagnosing fibromyalgia in adults, with a few minor differences. Firstly, a complete medical exam is carried out, including a detailed history, a physical exam, including a complete tender point test of all the 18 sites, and diagnostic tests to rule out arthritis and other rheumatic diseases. The diagnosis of juvenile fibromyalgia is made based upon the child's or adolescent’s report of:
· pain in three or more body areas for over a period of three months
· at least five or more painful tender points based on palpation
· additional symptoms such as sleep difficulty, fatigue, irritable bowel syndrome and pain worsened with anxiety or stress.
The only difference, as you can see, is the number of painful tender points required, with only five painful tender points needed to diagnose fibromyalgia in children, compared to 11 in adults.
One other thing to remember is that juvenile fibromyalgia can occur in "primary" or "secondary" form. Juvenile primary fibromyalgia syndrome (JPFS) occurs when there is no other rheumatic disease or musculoskeletal condition present. Juvenile fibromyalgia can also occur along with other conditions such as juvenile arthritis, in which case it is called "secondary" fibromyalgia.
Q. How do you personally treat juvenile fibromyalgia?
A. It is our firm belief that fibromyalgia is best managed using a team approach, with the patient and the family being very much part of the team. In our clinic the team involves a pediatric rheumatology physician, a physical therapist, and a psychologist, with the patient and their family included in the treatment planning discussions in order to come up with the best combination of drug and non-drug approaches. The main goal of treatment is to reduce pain and achieve the best quality of life possible.
· The pediatric rheumatology physician prescribes medications to help manage the symptoms of juvenile fibromyalgia, usually consisting of medications to help reduce pain and improve sleep.
· The physical therapist provides an exercise program with stretching, strengthening and aerobic exercise that starts out very gradually and increases in intensity.
· The psychologist specializes in behavioral medicine approaches, and teaches the patient a variety of pain management skills including: muscle relaxation techniques, how to manage stress and mood, how to pace activities, and how to problem solve to reduce pain during flare ups. They also work with the parents to teach them how to be good "coaches" for their child.
Q. Have research studies into juvenile fibromyalgia shown anything significant?
A. Research studies have shown that juvenile fibromyalgia is a condition that can cause an enormous amount of suffering in children and teenagers. It has a big impact on school attendance, recreational and social activities, and emotional functioning. While a good many patients get better over time, there are several patients, most likely those with a more severe form of the condition, who may experience a more chronic course.
Cognitive-behavioral therapy, along with routine medical care, has been shown to be a very promising approach for patients with juvenile fibromyalgia. Currently, we are conducting the first multi-site randomized clinical trial of cognitive-behavioral therapy for JPFS which is sponsored by the National Institutes of Health. The study is projected to be complete in 2009.
Q. What advice would you give to parents of a child with fibromyalgia?
A. I would advise two main things:
· Maintain a positive outlook
· Be proactive
Many children and teenagers with fibromyalgia do get better over time and can lead normal and fulfilling lives. However, the earlier your child is diagnosed and treated, the better the outcome can be. Find a physician and a healthcare team (as listed above) who you and your child are comfortable with. Be supportive of your child but do not let their symptoms affect your normal family functioning. Try to maintain the usual routine (including school) as much as possible. Encourage your child to continue to do as many normal activities as they can, including being with friends. Remember, your teenager is still a child and needs you to be a positive role model for them. They also need to be around children their own age so that they do not feel left out of their social/peer group. Lastly, do not be afraid to seek the advice of a health professional or a support group if you have questions.