An allergic reaction to a commonly inhaled medication left 13-year-old Cera feeling like she had “been burned from the inside out”— and the pain continued to grow worse. Within a few months, the young swimmer, who was on her way to becoming nationally-ranked, found the feel of water against her skin to be unbearable.
Even a car’s air conditioner or a blanket became sources of pain. The honor student lost the ability to go up the stairs to her bedroom, turn on the shower without help, or attend school. “She
was consumed with pain,” explains Cera’s mom, Marisa, a middle school teacher. “She would lie on the floor sobbing, begging me to do something to stop her pain.”
A difficult diagnosis
Cera was diagnosed with Complex Regional Pain Syndrome (CRPS), a chronic and often devastating condition in which the nervous system and immune system malfunction as they respond to an injury or tissue damage. Nerves misfire, sending constant pain signals to the brain and creating debilitating dysfunction, which for Cera included significant tremors in both hands.
The 8th grader was referred to the St. Jude Chronic Pain Program, a highly-respected outpatient program and one of the few with the multidisciplinary expertise to successfully treat CRPS in adults and children. The innovative, holistic eight-week program began addressing the physical, emotional and psychological effects of Cera’s pain. Individualized physical and occupational therapy was combined with biofeedback, pain intervention techniques, support from a clinical psychologist, and medical management from a board-certified pain medicine physician.
As muscle function is lost, nerves become more sensitive, creating a feedback loop that amplifies and magnifies the pain. Three to four days a week, for several hours a day, Cera traveled to the St. Jude Centers for Rehabilitation and Wellness and worked with the pain management team to break the cycle of over-firing nerves, constricting blood vessels, inflammation, fear and pain.
A multifaceted, multidisciplinary solution
Activities from baking to aquatic therapy were used to help Cera learn new body mechanics, rebuild strength, and practice pain control techniques. Simple tasks, from cutting paper to playing board games became exercises in how to problem-solve pain and how to use the mind-body connection to her advantage.
“Cera’s brain was telling her ‘this is going to hurt,’” explains Vibhuti Dharia, Occupational Therapist and part of Cera’s treatment team. “Fortunately, the brain learns from behavior. By helping Cera go back to the things she did before, while showing her how to minimize the pain, we began to break the cycle.” Pacing, icing, stretching and biofeedback helped calm her body as she gradually increased her activity—until the pain no longer seemed as dangerous and the sense of helplessness became one of determination.
After the program ended, she was a different child—or to be more accurate—the child she had been. “She was smiling all the time and talking about the future,” explains Marisa, who cried when she saw Cera once again walk up the stairs at their home. And the girl who had gone a year without being able to take a shower by herself, returned to swim practice. Four months later, she took second place in the USA Swimming Western Zone Championship at Coronado Bay, a 1000 km open water race.
“They gave my daughter’s life back to her,” explains Marisa. “It’s hard to understand the gratitude we feel, unless you’ve seen a child brought out of a pain-filled existence to one of joy.”
Changing lives
Within St. Jude’s pain program, transformations like Cera’s are common. From debilitating back pain and fibromyalgia, to headaches and abdominal pain, hundreds of patients ages 8-88 have learned firsthand why the program is so successful.
“Pain is an extremely complex, often poorly understood medical problem that profoundly affects everything you do,” explains Arthur Zepeda, MD, a board-certified pain medicine expert at
St. Jude who helped treat Cera. “Before reaching us, patients have often been to many doctors and suffered for years. Restoring these lives is our entire focus. ” The result is evident in the almost constant smile of a teenage girl.
For more information about the St. Jude Chronic Pain Program, please call (714) 578-8716.
