Complex Regional Pain Syndrome (CRPS) is a chronic pain condition that can be so devastating that it’s coined the “suicide disease.”
CRPS happens after an injury when the brain never stops sending pain signals to the body.
Joscey,17, works with her doctors, a physical therapist, and a pain psychologist to control her chronic pain, which started when she was 12 years old. It left her unable to attend school, she couldn’t walk and had to give up her favorite sport, basketball.
“I felt like I would be jealous of other people walking. I wanted to walk without pain. I wanted to run without pain. I wouldn’t. I didn’t even know how to run anymore,” Joscey said.
Patients describe CRPS as constant throbbing, stabbing or burning.
“I like to think about it this way. So, let’s say that you’re in the kitchen and you’re cooking, and you accidentally place your hand on a hot stove. What would you do? Well, you would remove your hand,” explained Joscelyn Gomez, Texas Children’s Hospital pain psychologist. “In that split second, what happens is that pain signals travel through your body to get to your brain.... we like to think that there’s a gate that opens, and it allows that pain signal to get to your brain and tell you, ‘Hey, we’re gonna lose your hand, or else you’re gonna get burnt,’ and once you remove your hand and that injury is healed, that gate should close. That’s what should happen. For some patients, that gate never closed, and that pain signal continues to travel to your brain all the time and so our job as an interdisciplinary team is to help patients close the gate,” she continued.
Seeing a young, healthy girl say she’s in crippling pain, her mother learned, makes a lot of people skeptical.
“I was just trying to get a diagnosis. Like everyone kept gaslighting us and telling us that it’s just in our head, or that I was making up stuff,” said Carmen Guerra. “I just tried to never stop looking for help because I knew something was wrong.”
“Many of our patients say that people don’t believe me. But our job is to tell them, ‘I believe you,’” Gomez said.
The worst part of the syndrome is there’s no cure. That’s why mental health help is critical. CRPS can be so debilitating, that it has a high rate of suicide.
“We don’t understand why some patients who have an injury and are healed are okay after that injury is healed,” Gomez said. “Kids are developing their own identities at that age, too. So, that also causes distress, like, ‘Who am I,’ right? This pain has taken over my life.”
Through a team of doctors, a physical therapist, and her psychologist, Joscey is on her way to living a normal life again. She plans to attend her senior year of high school in person this year and try out for the basketball team.
“It means a lot to finally get back to try-outs and even just to try out,” she said. “I’ve been to Texas Children’s for two years now, and I finally felt like I was able to say I was pain-free for a few months, and it felt really nice to say that.”