Complex regional pain syndrome (CRPS) is a chronic pain disorder that can be so devastating that it has been called a “suicidal disease.”

CRPS occurs after an injury when the brain continuously sends pain signals to the body.

Joscey, 17, is working with her doctors, a physical therapist and a pain psychologist to manage her chronic pain, which began when she was 12. She was unable to go to school, could no longer walk and had to give up her favorite sport, basketball.

“I felt like I was jealous of other people who were running. I wanted to run without pain. I wanted to run without pain. I couldn’t do that, I didn’t even know how to run anymore,” Joscey said.

Patients describe CRPS as a constant throbbing, stabbing or burning sensation.

“I like to think of it this way. Let’s say you’re in the kitchen cooking and you accidentally put your hand on the hot stove. What would you do? You’d pull your hand away,” explains Joscelyn Gomez, a pain psychologist at Texas Children’s Hospital.

“In that split second, pain signals travel through your body and get to your brain. We like to think of it as a gate opening. And it allows the pain signal to get to your brain and tell you, ‘Hey, we’re going to lose your hand or you’re going to get burned.’ And once you take your hand away and the injury heals, the gate should close. That’s what should happen. In some patients, that gate never closes and the pain signal keeps traveling to your brain the whole time. So our job as an interdisciplinary team is to help patients close the gate,” she continued.

Her mother learned that many people are skeptical when a young, healthy girl says she is suffering from debilitating pain.

“I just wanted a diagnosis. Everyone kept messing with us and telling us that we were imagining it or that I was imagining it,” said Carmen Guerra. “I just tried to never stop looking for help because I knew something was wrong.”

“Many of our patients say people don’t believe me. But our job is to tell them, ‘I believe you,'” Gomez said.

The worst thing about this syndrome is that there is no cure, which is why psychological help is so important. CRPS can be so debilitating that it has a high suicide rate.

“We don’t understand why some patients do well after an injury,” Gomez said. “Children are also developing their own identity at this age. That also causes stress, like, ‘Who am I?’ That pain has taken over my life.”

With the help of 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 me to finally be able to go back to tryouts, or even just go to tryouts,” she said. “I’ve been at Texas Children’s for two years now, and I finally felt like I had made it. I could say I had been pain free for a couple of months, and it was a really nice feeling to be able to say that.”