Twelve-year-old Amanda was skiing the last run of her family vacation when she wiped out and hurt her left ankle. Doctors at the local hospital told her it was a sprain, and she’d feel better in a few days. Amanda’s pain did not improve in a few days. In fact, it got much worse and spread upwards toward her knee. This concentrated pain would cause her to eventually miss three months of sixth grade. Now, thanks to the team in the Center for Amplified Musculoskeletal Pain Syndrome at Children’s Hospital of Philadelphia (CHOP), Amanda is healthy, active and playing college sports.

Pain beyond a sprain 

After arriving home with what was diagnosed as a sprain, Amanda’s pain worsened, eventually spreading from her ankle to her foot, leg and knee. She felt constantly achy and sensitive to touch – even just a playful brush from the family pets. The pain and sensitivity became so intense that Amanda could not walk her dogs, play sports or even get dressed on her own. And when she did get dressed (with her mom’s help), she wore mostly shorts, sweatpants and clothing with lots of stretch that would barely touch her skin. She kept the fabric of her bottoms above the knee and could not tolerate socks or shoes at all, even going outside barefoot. 

A surprising diagnosis

That February doctors tried an ace bandage, a boot and a cast to help heal Amanda’s leg, but nothing worked. Multiple X-rays and an MRI revealed inflammation, but did not reveal any structural damage. When treatment after treatment failed, Amanda’s parents took her to an orthopedist near her home on Long Island, NY. This doctor had learned about something called amplified musculoskeletal pain syndrome (AMPS) and complex regional pain syndrome (CRPS) in medical school and recognized the symptoms in Amanda’s pain. He immediately recommended she seek treatment here at CHOP. 

The AMPS pain cycle

AMPS is a rare medical condition that can cause intense on and off (intermittent) or constant pain for children in a single area or throughout their bodies. With AMPS, the body’s signals get mixed up, and pain signals are sent to both the brain and the nerves that control blood flow in the body, or the body’s “fight or flight” response. With less blood flow, the muscles and bones don’t get enough oxygen, and waste like lactic acid builds up. This makes the area hurt even more. The new pain sends another signal, tightening the blood vessels even more. This cycle keeps repeating, making the pain worse and worse, like a sound getting louder and louder. There is a wide spectrum of AMPS, so unless a doctor has seen a variety of children with the symptoms, they may not recognize it, making it difficult to diagnose.

Motivation and regaining mobility

While waiting for her initial appointment at CHOP, Amanda began physical therapy (PT) with a local clinician. She felt “freaked out” and constantly worried about external stimuli that could cause her more pain. She wondered about the effects of this rare condition and if the pain would ever go away. She felt relief in April, on her very first day at CHOP. 

Since no two AMPS cases are alike, no two treatment plans are alike. For Amanda, treatment meant intensive PT, occupational therapy (OT), group activities and cognitive-behavior therapy (CBT). Her treatment focused on exercise to increase cardiovascular tone, and coping strategies and stress management practices with a goal of having her return to regular activities like school, sports and socializing with friends.

For Amanda, PT was one of the main healing factors. Her physical therapists took away her crutches on the first day and guided her in re-learning how to walk unassisted for the first time in months. Even through the pain and nerves, she felt if CHOP staff could believe in her, she could believe in herself and regain her lost mobility and strength. The ongoing support from staff and her family was motivating.

Group activities like swimming, yoga and music therapy made her feel like she wasn’t alone. Talk therapy appointments were helpful because she could share with people who knew about the syndrome and understood the hardships a child living with AMPS experiences. 

The challenges of living with AMPS

Amanda found the emotional aspect of living with AMPS the hardest. She was very young, trying to first get over losing the use of her left leg due to pain. Then she arrived at CHOP where she had to almost pretend the pain didn’t exist so she could walk and wear her pants over her legs and ankles again. She had to begin telling her brain that structurally her body was fine, and she just had to overcome mental hurdles. “With AMPS, you have to move your body, so your brain knows you’re okay. It was almost the opposite of mind over matter,” she says. 

Being away from her friends was hard too. She missed being able to stay busy during the day and see people and not worry about pain. 

A new beginning 

Because of the distance between CHOP and their home in NY, Amanda and her family stayed in Philadelphia during the week while she attended therapy. She and her parents would walk from CHOP back to their hotel. They’d always pass a playground with a jungle gym, and she’d try to climb it. Finally, during her last week of treatment at CHOP, she climbed to the top! 

Three months after her injury, Amanda was strong enough to head home and return to sixth grade. Being thrown back into her school routine and having everyone ask what happened was difficult. She had to balance regaining the muscle memory of sitting, standing and walking all day at school with explaining, “I hurt my leg but I'm fine now.” With some tutoring and support from family and close friends, Amanda got back into a groove. 

Looking back on it, Amanda says the process, “taught me that it will all work out in the end even though it won't feel like it. And to always keep going. It gave me a stronger sense of self.” To other kids facing a similar challenge she says, “You’re not alone. Keep going. It will be worth it in the end to push yourself and have your life back as you knew it. And if you have a flare up, you’ll know how to deal with it. It’s physically and mentally challenging but worth it.”

Amanda’s hard work paid off. She went back to sports, playing basketball and soccer, and later became one of the top high school volleyball players on Long Island. She's now a first-year student at the University of California Santa Barbara, majoring in global studies and hoping to one day work in international business.

Chronic pain from AMPS can flare up even after treatment. It’s important for Amanda to stay physically active and to recognize and manage stressors in a healthy way. She plays intramural volleyball and goes on walks and runs on the beach every day. “I never want to be sitting in my dorm here because it’s so pretty,” she says. “It’s the perfect place to not have any flareups because I'm always walking around or doing something fun.”