Woman feels like she’s ‘burning alive’ as rare condition causes blisters, sores

PEORIA, Ariz. – An Arizona woman who has been living with an incredibly painful disease for nearly two years is sharing her story so others suffering from the same affliction won’t feel so alone.

“It feels like somebody has dipped you in gasoline, lit you on fire and put you in a trash compacter,” 29-year-old Kayla Hansen told KTVK. Her condition is called Complex Regional Pain Syndrome and experts call it a perfect storm, combining a triggering injury with a genetic predisposition for chronic pain.

Two years ago, she was a restaurant manager. One day, a door slammed on her hand. That seemingly small event would turn her into a full-time patient.

“The swelling didn’t go down, it was red and bruised, and I started getting electric shock pain,” Hansen said.

They go all the way up my arms on both sides and I also have them on my scalp,” Hansen said, speaking of sores.

CRPS is believed to be caused by a disruption to the central nervous system and doesn’t always look the same for each person. Infusions of the powerful sedative ketamine can provide some relief. Some patients also find spinal cord stimulators helpful.

“It’s known as the suicide disease. They take their own life because they feel so alone and they’re in so much pain,” Hansen said.

She recently traveled to Arkansas to talk to Dr. Katina van der Merwe, an expert in this. Dr. van der Merwe recently wrote a book called Putting Out The Fire.

“These people feel at least one or more body parts are on fire, literally burning alive,” said Dr. van der Merwe. “They’ll lose weight, can’t sleep at night, headaches often.”

She said they often have skin lesions, but not all those afflicted do.

“She will literally feel the heat come up and it will blister and develop to sores,” Dr. van der Merwe said.

She stressed the importance of early diagnosis.

“It is much more possible to go into remission within one year of developing this condition,” Dr. van der Merwe said.

Dr. van der Merwe said this underdiagnosed condition affects millions, and causes the highest level of pain a human can handle.

“You could have a child who has a fracture and if you didn’t know about this condition, you’re going to waste so much valuable time going from doctor to doctor,” she said.

Hansen said she will return to Arkansas for more treatment once her arms heal a bit more. She is also seeing a trainer, whose CRPS is in remission.

“It hurts and its miserable, but she’s been showing me such great championship spirit,” said trainer Chris Mazzella.

“If I have to go to different states different countries, I’m going to keep going,” Hansen said. “I want my life back.”