Hannah Moore walks down the halls of Walton-Verona High School in Northern Kentucky with an extra confidence and bounce. A fan of Chilean poet Pablo Neruda, she's working on the yearbook staff and eager to get to her journalism class. Earlier, she walked her dog Jensen. When she gets home, she'll walk him again, do homework, and ride her trendy recumbent bicycle.
Typical? Yes, but not for this 16-year-old. "Two years ago, I started to dislocate things; I could hardly move without popping a joint out of place or straining it," she says. "I was struggling with severe pain, including daily migraines. Things just kept piling on. GI (gastrointestinal) problems cropped up."
Hannah's pain got worse—the dislocations—more than two a month. She could no longer attend school, so she had to take classes online. Relief finally came eight months later when Hannah's fibromyalgia and Ehlers-Danlos syndrome (EDS) were diagnosed.
"At least then we knew what it was," says Hannah's mom, Beth Moore-Glover.
Fibromyalgia is a condition that causes chronic muscle pain, fatigue, and sleep problems. EDS is a genetic condition that causes very flexible joints that are prone to dislocation and loose, thin skin that is easily bruised and wounded. Together, the pain had taken over, and Hannah was also very depressed.
Fast forward to today, and Hannah seems like any other active teenager. She's back in school—pain and mobility issues no longer define her. Last spring, Hannah joined FIT Teens—a clinical study offered through Cincinnati Children's Hospital Medical Center and supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). "Our research focuses on how complementary mind-body treatments can be used by children and teens who suffer from chronic pain," says Susmita Kashikar- Zuck, PhD, who leads the study.
The program combines 45 minutes of special neuromuscular exercise training with 45 minutes of cognitive behavioral therapy (CBT). These include mental coping exercises that retrain the brain using distraction, imagery, and relaxation. It also includes exercises that are focused on improving body biomechanics and preventing injury. The teens come to the sessions twice a week for eight weeks.
"We've learned that pain impacts the life of the child and indeed the whole family," Kashikar-Zuck says. "Children with chronic pain often feel isolated and not understood by their peers. Parents are unsure about how best to support their child while trying to maintain a normal life."
Hannah says the trial has "been really cool" and helped her learn to cope. "I use the CBT exercises a lot. I can redirect my thoughts and not give my mind over to the pain. The physical exercises have also been helpful, by teaching my muscles what I can safely do."
She went from having about two dislocations per month to only one in eight months. "I still have limits," says Hannah, who will join another similar study at Cincinnati Children's Hospital. "I can't go to a concert one night and to the mall the next day like other kids my age. But, I've learned my body, what I can and cannot do, and it's completely changed my approach to life."
Hannah's mom says that FIT Teens has been a godsend. "Hannah now understands that while she's a fragile person, she knows how her body works with her brain, and she's able to live in her own body with much more ease."
Hannah's bright smile says it all. The depression has subsided, and she's well on her way to leading a full and active life.