Fibromyalgia in Teens

The painful condition doesn’t just affect adults

A hobby she can enjoy— Fibromyalgia limits some activities for Sarah Otto, but not sewing. Here, she goes fabric-shopping with her mother, Deb, at Jo-Ann Fabric and Crafts in Whitehall.

A Specialized Program

The Pediatric Specialty Center at Lehigh Valley Hospital now offers a team approach to treat fibromyalgia. Young patients have access to a pediatric rheumatologist, adolescent medicine physician and exercise physiologist. For more information, call 610-402-CARE or visit lvh.org/healthyyou.

Two years may not seem long to an adult, but to a teenager with fibromyalgia it can feel like forever. Just ask Sarah Otto, 16, of Schnecksville, who suffered with the condition for two years before she finally found out what was wrong.

“When I was 13, my body started aching all the time,” she says. “The pain just wouldn’t go away, even when I took ibuprofen. I also felt tired all the time, but couldn’t sleep. It was very frustrating.”

Sarah had to stop playing soccer and withdraw from clubs, sleepovers and other activities teens enjoy. “My life turned upsidedown,” she says. She often missed school or couldn’t make it through the day without coming home to rest, and her grades suffered. “Sarah became sullen, though she’d always been outgoing and friendly,” says her mother, Deb. “This was more than just normal teen angst. Sarah was a different person.”

Sarah’s struggle reached the breaking point during a family meeting when she admitted to her parents she was terribly depressed and needed help. “We knew Sarah wasn’t feeling well,” her mother says, “but we had no idea just how ill she had become.”

The family consulted a series of doctors without finding relief. Then a friend suggested Sarah Stevens, M.D., an adolescent medicine specialist at Lehigh Valley Hospital and Health Network. After ruling out other illnesses, Stevens made the diagnosis.

“People with fibromyalgia have chronic muscle-and-joint pain,” she says. “They often describe feeling achy all over, and when examined they have many characteristic ‘tender points.’ ” Fibromyalgia also can cause sleep disturbances, extreme fatigue, problems with memory, chronic headaches and irritable bowel syndrome—all of which Sarah struggles with every day.

Fibromyalgia affects 4-6 million American adults. “We don’t know exactly how common it is in children and adolescents, but we do know that many adults with fibromyalgia had the onset of symptoms in their teen years,” Stevens says. “Among adults, more women than men seem to develop fibromyalgia, and that seems to hold true for adolescents as well.”

To be diagnosed, an adolescent must have had three months of pain, says Stevens’ colleague, pediatric rheumatologist C. April Bingham, M.D. “And they must feel tenderness in specific body areas when pressure is applied.”

Stevens sees many patients who, like Sarah, have overlapping conditions—fibromyalgia, chronic fatigue syndrome and postural orthostatic tachycardia syndrome (a condition affecting blood pressure and heart rate). “Our goal is to treat teens’ symptoms and also help them function in school and at home during their recovery,” Stevens says. Sarah, for example, takes medications for sleep, pain and depression.

Some young patients are referred to a therapist for help with the stress and depressed mood that often come with fibromyalgia. Sarah is learning biofeedback to help her cope with her pain. Most physicians also recommend exercise and physical therapy. “Aqua therapy in a warm pool and other types of exercise loosen joints, improve muscle strength and can encourage better sleep,” Bingham says.

The prognosis for young patients like Sarah is very good, Stevens says: Many recover completely over time. Meanwhile, Sarah is adjusting to all aspects of her disorder. “Fibromyalgia has changed my life,” she says. “Knowing I can cope with this gives me more faith in myself.”

Want to Know More about teen fibromyalgia, including the responsibility of schools to help students with medical problems? Call 610-402-CARE or click here.

Published from Healthy You Magazine, November-December 2007

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