NEW BOSTON — When a simple sprained ankle led to a debilitating condition called Complex Regional Pain Syndrome (CRPS), Alyssa McGraw’s life changed forever, but instead of giving in, she is fighting to be an advocate for herself and for others who are living in pain.
Four years ago, Alyssa, 15, of New Boston, was playing with her dog in her yard when she injured her ankle, according to her mom, Kristen McGraw. The sprain was no different than any other common childhood injury and everyone assumed it would just take some time to heal. But as time passed, the pain in Alyssa’s ankle continued to get worse, not better.
“My tough kid, who never complains about anything, was crying because her ankle hurt,” said McGraw. “She was limping and it was very clear that something was wrong.”
Doctors examined Alyssa, ordered x-rays and MRIs, but couldn’t find anything wrong. She was sent to physical therapy, but by that point, the pain had spread from her ankle to her foot and up her leg.
“The physical therapist couldn’t even touch her in order to evaluate her. She couldn’t tolerate it,” McGraw said. “She couldn’t wear sneakers, had to dress in sweatpants, couldn’t even wear socks.”
After three months, she was sent to an orthopedist who tried to evaluate Alyssa, but based on her symptoms, believed she was suffering from Chronic Regional Pain Syndrome, said McGraw. CRPS is a condition that occurs after an injury where the nerves continue to send pain signals to the brain despite the fact that there is nothing physically wrong. Alyssa was immediately sent to Boston Children’s Hospital, which operates a pediatric pain clinic in Waltham, Mass. But before she could be admitted to the clinic, she had to endure a month of physical therapy in order to satisfy insurance requirements.
When the month was over, Alyssa, an avid cheerleader and athlete, experienced the biggest challenge of her life. At the pain clinic, she went through eight hours of physical therapy, occupational therapy, and psychological therapy five days a week for five weeks. At home, she was required to do an additional two hours of physical therapy every day, her mother said.
But all of those excruciating hours in therapy didn’t cure Alyssa because CRPS is not a curable condition. Instead, the therapy taught her how to live with chronic pain, how to endure “pain flares” that occur when the nerves are working overtime, and how to cope without using any drugs.
“The psychology piece of it was huge because CRPS causes incredible anxiety,” said McGraw. “She learned a lot of coping skills.”
Alyssa left the clinic with the pain fairly well in check, and though she has had pain flares, each one has made her a little bit stronger. She is back playing lacrosse and is cheerleading, which is her passion. But she’s also reaching out to others with CRPS, and talking to her peers at other high schools about overcoming struggles that seem insurmountable.
“Yeah, I got dealt a bad hand,” she said, “but I’m playing it the right way.”
Alyssa has connected with other people in New Hampshire with chronic pain and has organized a support group that meets at the Nashua Public Library the first and third Thursdays of each month at 7:30 p.m.
“It’s good to be able to talk with people who get your life,” Alyssa said. “We don’t sit and talk about our pain. We make the best of it. They have become a home away from home for me because we all know what it feels like to live with pain.”
It’s likely that Alyssa will have CRPS for the rest of her life, and the most important thing she can do to keep the pain in check is to stay active.
“I can’t roll into a ball and give up,” she said. “I want to help people. A lot of kids don’t have their own voice to stand up for themselves. I want to be that voice for them.”