Last year, 13-year-old Nina missed 55 days of seventh grade. What had begun as an unexplained pain in her ankle spread quickly throughout her body, forcing her to stay home and abandon her favorite activities — fencing and horseback riding. Before long, she was relying on a wheelchair and spending most of her time in bed.

Nina’s parents, Adrianna and Raghuveer, took her to various clinics near their Baltimore-area home but left each without a diagnosis. What’s worse, Adrianna recalls, is that several doctors dismissed Nina’s symptoms, suggesting the teen was acting out for attention. 

“We’re talking excruciating, level-8 pain,” Adrianna says. “When providers told us it was all in her head, we felt helpless and lost, like we were failing our daughter.”

Those feelings dissolved when the family came to Children's Hospital of Philadelphia (CHOP).

Finally, an answer

The day of Nina’s intake evaluation in CHOP’s Division of Rheumatology, two things set Adrianna and Raghuveer’s minds at ease. 

First, pediatric rheumatologist Sabrina Gmuca, MD, MSCE, and her colleagues agreed Nina had amplified musculoskeletal pain syndrome (AMPS) — a condition no one had mentioned to the family before. Similar to fibromyalgia in adults, AMPS causes children to experience intense, chronic musculoskeletal pain without any identifiable injury or inflammation. Eighty percent of AMPS patients are pre-adolescent and adolescent girls.

Second, Dr. Gmuca, Director of CHOP’s Center for Amplified Musculoskeletal Pain Syndrome, reassured Adrianna and Raghuveer that Nina’s pain was real.

“It brought me so much peace that these doctors 100% believed my daughter. Their validation, their knowledge and the fact that they had a treatment plan gave us confidence in the team from the start,” Adrianna says.

The grit to keep going

Experts aren’t exactly sure why AMPS occurs, but when it strikes, the part of the brain and the nerves that sense pain “switch on” and stay on – even when the patient does not have a discernible reason to be experiencing pain. Without a specific injury or illness to address, physicians cannot rely on pharmacological or surgical solutions.

No two AMPS cases are alike, so at CHOP, no two AMPS treatments are alike. Because Nina’s case was severe, she participated in a personalized 6-week hospital treatment program, spending 8 hours a day, 5 days a week with a multidisciplinary team of rheumatologists, physical and occupational therapists, music and art therapists and a psychologist. During this time, Adrianna lived with Nina at the Philadelphia Ronald McDonald House, while Raghuveer remained in Maryland with their younger daughter, Nora.

CHOP’s AMPS team prioritizes improving patients’ functional abilities – before the pain is gone – so patients can return to their regular activities — school, sports and socializing. Two weeks into her program, Nina got so frustrated, she told her mother she wanted to quit. Even practicing walking wore her out.

“We say our primary focus is restoring function because we know that patients’ pain, while very real and intense, does not cause damage to their body, and the best way to retrain the nervous system is to have the body work through daily activities so that those signals aren't perceived as threats or danger signals,” Dr. Gmuca explains. “At the end of the day, this program is a fast-track way to build patients’ grit. Pain improves as function improves.” 

Wheeling in, walking out

By week three, Nina’s outlook had improved. She began looking forward to her therapies, which were customized to meet both her needs and interests. Her team even integrated fencing-related movements into her exercises so she could prepare to return to the sport she loved most.

She also benefitted from psychotherapy with Whitney Rog, PsyD, a clinical psychiatrist at CHOP, who Adrianna says enhanced her daughter’s self-confidence, coping skills and understanding of the mind-body connection.

In addition to counseling patients, Dr. Rog facilitates a support group for families of children with AMPS. “Much of the treatment aims to empower parents to step back, allowing their child to take ownership of their diagnosis and reclaim their sense of agency,” Dr. Rog says.

This approach worked for Adrianna and Raghuveer, who watched as their daughter regained her strength both physically and mentally. Six weeks after entering CHOP’s Buerger Center for Advanced Pediatric Care Building for her first day of therapy in a wheelchair, Nina walked out through those same doors – unassisted – after her final session.

Another 6 weeks later, she returned for a follow-up visit. This time she had with a surprise for her team: a video of herself skateboarding alongside her sister on a scooter.

“After she missed almost half of seventh grade, my biggest goal was for Nina to walk into her school for eighth grade, on time and on her own,” Adrianna says. “And thanks to CHOP, in August, that’s what she did.”