In 2018, when Eleanor’s parents couldn’t find a doctor who could identify what was causing their daughter’s constant head pain, they had never heard of amplified musculoskeletal pain syndrome (AMPS). Now, five years after Eleanor received an AMPS diagnosis at Children’s Hospital of Philadelphia (CHOP), she is working to share information about AMPS and provide others with the condition a chance to connect. 

“I launched the AMPS Awareness Association as a way to raise awareness and share knowledge of AMPS and chronic pain in general,” says Eleanor, now an 18-year-old high school senior. “I’m attempting to create a community for people dealing with AMPS pain and chronic pain. The goal is education and connecting people.” 

The AMPS Awareness Association website is listed as a resource on CHOP’s Center for Amplified Musculoskeletal Pain Syndrome web page, and CHOP patients are offered an informational flyer about the organization. Eleanor also works with three other pediatric hospitals to promote the AMPS Awareness Association. 

Two years without an answer 

For Eleanor, her journey began as an adenovirus and double ear infection after playing in the rain as a fifth grader. After several rounds of antibiotics, the infection went away, but the pain remained. 

Her parents took her to otolaryngologists (ENT), neurologists, specialists for temporomandibular joint (TMJ) disorder and headache specialists, but none could find a cause for her constant pain. 

“It was incredibly frustrating as a parent to see your child in pain, and no one could figure out why,” says her mother, Liz. “I just kept thinking there was something I was missing, and if I could find it, I could make it better.” 

In 2020, about two years after the pain started, Eleanor was seeing an orthopedist for an unrelated back injury. That doctor recommended she see David Sherry, MD, the founder of the Center for AMPS at CHOP. 

An atypical presentation 

While AMPS pain can be found anywhere in the body, it most frequently strikes the limbs or torso. It often follows an injury or illness that has resolved, and the degree of pain is more intense than would normally be expected. 

In AMPS, pain is amplified because there is an abnormal short circuit in the normal pain response. Instead of the pain signal going from the site of the injury through the spinal cord to the brain, the signal also goes to the neurovascular nerves, causing blood vessels to constrict. Smaller blood vessels restrict blood flow and allow a buildup of lactic acid, which causes more pain. The cycle repeats until it becomes continuous. 

Treatment for AMPS is multifaceted. It can include intense physical therapy (PT), which can break the pain cycle, and aerobic exercise to increase cardiovascular tone. Psychological therapy helps the child learn coping strategies and stress management. Desensitization is often included. 

In Eleanor’s case, the pain was localized in her ears and head, so the usual PT wasn’t applicable. She did begin running to increase aerobic exercise, and she listens to loud ’90s and hip-hop music through headphones to desensitize her ears. 

A positive mindset 

“Dr. Sherry changed my life,” Eleanor says. “He understood what I was going through and gave me the diagnosis. I took the skills that the AMPS program taught me and worked on things on my own.” (Dr. Sherry has since retired, and the Center for AMPS is now led by rheumatologist Sabrina Gmuca, MD, MSCE.) 

Eleanor joined her school’s track and cross-country teams, which helped. The biggest change, however, was developing a positive mindset. 

“For me, it’s not thinking, ‘Why am I in pain? I’m so limited. This sucks. Boo me,’” Eleanor explains. “Why would you turn something you have to deal with anyway into a negative outlook? Instead, I view my positive mental mindset as my superpower.”

Living a full life 

Eleanor does everything a normal teenager does; well, actually, she does more than most teens. She’s the trainer for her school’s cross-country team (back problems limit her running). She launched debate, entrepreneurship and young investment clubs at her high school. She received a Helene Cody Foundation grant to start Chess Queens, a program to teach chess to young girls in her community. She published an original research project about the H1-B visa program. She also launched the AMPS Awareness Association. 

All these activities happen while she’s an honor roll student and taking AP classes. 

“I couldn’t have done it without AMPS,” Eleanor says. “I don’t know what kind of person I’d be now without having to live with constant pain and having to persevere through it. Obstacles don’t really exist for me. It’s about managing my time. If so many other people who have AMPS can persevere, then why shouldn’t I?” 

Her mother says, “This is not the reality I want for my child, for her to be highly functional but still have pain. She amazes me in every possible way with her mindset and what she does every day. I do have hope that one day we’ll find out why this pain won’t stop and how to make it stop.” 

Giving back 

Three years after her diagnosis, Eleanor wanted to do more to help other kids dealing with AMPS. She had always loved baking, so she started her own business, Eats by Ellie, and began selling her cookies at farmers’ markets and for special events. Proceeds were donated to CHOP to support the Center for AMPS. 

“Chocolate chip and lemon crinkle are big sellers,” she says. “And chocolate heaven, which is double chocolate chip, is a fan favorite across all ages.” 

She’s focusing more on the AMPS Awareness Association now, working with a social media expert, another teenager, to share information more broadly through Facebook, Instagram and TikTok. 

“I think my nonprofit has the ability to make a bigger impact in people’s lives,” she says. “I want to make the AMPS Awareness Association scalable to help more people, and social media is the way to go.” 

Liz is supportive of her daughter, and a bit in awe of her. “She is spearheading this herself, running her own show,” Liz says. “The blessing and curse of AMPS is that it has given her the tenacity, grit and resilience to keep chasing her dreams.”