SPRINGFIELD, NJ — Ashley Campos, 15, spent most nights sobbing. Even the slightest touch of her shirt on her back brought intense pain. Anthony and Mary Jo Campos could only console their daughter. Little sister Jenna was scared and confused. In time, the pain spread and intensified.
“I remember screaming for my mom because my feet felt like there were a trillion needles in them, and my legs felt like there were rocks weighing them down,” Ashlyy Campos said. “I remember my mom calling for my dad to come urgently because I was no longer able to hold myself up.”
Since being diagnosed earlier this year with a form of amplified musculoskeletal pain syndrome, or AMPS, the Springfield resident has begun a rigorous regimen of physical therapy at Children’s Specialized Hospital in Mountainside that has helped ease the pain.
And she has become an advocate for this difficult-to-diagnose and largely misunderstood medical condition. Her mission to spread awareness of AMPS brought her to the Township Committee meeting on Tuesday, Sept. 25.
Ashley Campos stood in front of the room as Committeewoman Erica DuBois read a proclamation designating September as Pain Awareness Month in the township. Afterward, the Jonathan Dayton High School junior spoke about her ordeal. There’s so much she wants people to know about what it’s like to live with AMPS. Perhaps the most painful aspect of it is that others struggle to understand it.
She would push herself to get through the day, finish all her homework and then break down. Curled up in a ball of agony, the teen discovered, makes it hard to make plans with friends.
“I missed just being able to get up and in the moment of things, call up one of my friends and say, ‘Hey let’s go out,’” she said. “There were so many times I had to call them and say “I can’t go’ because I couldn’t walk.”
She also had to give up sports. She ran cross-country and played basketball as a freshman and also loved to play softball. Instead, she went to dozens of doctors
for one X-Ray, blood test and MRI after another.
“Every day, it was the same fight that I had to put up, waking up in the morning struggling to get out of bed and get ready to go to school followed by putting on an act at school so all of my friends would not know how I was really feeling, then pushing through to finish my homework and eventually breaking down when I realized my pain was too much for me to take anymore,” Ashley Campos said.
“And so, I would lay on my couch with my parents sitting next to me watching me scream in pain, not knowing how to help. And my sister, terrified, not
completely understanding what was going on with me at the time.”
Her physician, Dr. Marykay Nutini, a pediatric rehabilitation medicine physician at Children’s Specialized Hospital, said AMPS is often triggered by an illness or injury. A short circuit occurs in the usual path that pain takes after an injury. Pain normally travels from the site of the injury, through the spinal cord and to the brain. In a child with AMPS, this route is interrupted and the pain signal goes to the autonomic nerves, which control involuntary movements such as breathing. When the pain reaches the autonomic nerves, they react by constricting the blood vessels, which cuts off the flow to parts of the body. At the same time, there is a buildup of lactic acid, which is produced when there is a lack of oxygen. These factors combine to cause pain that is more intense.
Nutini said AMPS is treated with physical therapy and that Ashley Campos has been an especially dedicated patient.
“She was doing the outpatient program for a while and starting to plateau a little bit,” Nutini said. “We talked about doing inpatient (therapy) and she didn’t want to give up on school and things like that. So, she really went all out with the outpatient program to get control of her pain.”
Her physical therapy has helped take away the pain and given her back her smile. The teen said she’s back to doing a lot of things she never thought she would be able to do again. She not only dreams of getting back onto the basketball court, but also has her eyes set on a court of law; one day she wants to be a lawyer.
The verdict, she said, is that one can’t go through something like AMPS and its searing pain and its ability to almost destroy your life without learning something about oneself.
“I learned that I was stronger than I thought I was,” she said. “I was able to handle so much more. The biggest thing was, and it was always a question I got when I was going to the doctors, was how was your grades? With all this I was still able to manage get straight “As, the high honor roll and all that.”
Mary Jo Campos said, “She surprises me in how strong she can be, but she gets a lot of support from her friends, her family. Some of her friends would be like, ‘Oh, you just don’t want to go out with me. You’re not telling the truth. But your true friends and family, they’ll be by your side.”