Springettsbury woman battles rare 'suicide disease,' runs support group to help other sufferers
Imagine experiencing pain so excruciating, it causes you to scream out in anguish — and no amount of medication can make it go away.
That's what Springettsbury Township resident Jen Hindley deals with every day. The 31-year-old lives with a rare, incurable condition called complex regional pain syndrome, or CRPS.
“It is the most painful condition ever recorded in mankind,” Hindley said. “If you look up the McGill pain scale, it is the most painful condition ever recorded in history.”
It's so debilitating that her mother, Ruth, had to become her full-time caregiver.
It is also sometimes referred to as the suicide disease because it causes untreatable pain so severe that some sufferers contemplate taking their own life rather than living with a lifetime of pain.
“It turns your nervous system haywire,” Hindley said. “A lot of the parts of your nervous system that are regulated naturally, dysregulate.”
CRPS looks different for every person that has it, she said, and it spreads.
“Some people have it in a finger. Some people have it in an arm. Mine started in my foot after I had broken my heel in 2018," she said.
CRPS typically develops after an injury, a surgery, a stroke or a heart attack. The pain caused by the condition is out of proportion to the severity of the initial injury. It is unknown what causes the condition, Hindley said. It affects about 200,000 people in the United States, according to some estimates.
A surgery on Hindley’s heel seems to have set the condition in motion.
“Shortly after that surgery, I started noticing my foot and leg were turning black,” Hindley said. “Shortly after, I was getting these just intense bouts of pain.”
'Screaming bloody murder': More surgery was prescribed for her foot to hopefully correct what was causing her pain. That just made the condition get worse.
“That’s when things started to take off,” Hindley said. “Neighbors were calling because they could hear me screaming in pain. I could not move for weeks at a time because moving a centimeter, I would be screaming bloody murder.”
No amount of pain medication would help. Finally, in September 2019, after going to a pain management clinic, Hindley learned what was wrong.
“It took nearly two years to get a diagnosis,” Hindley said. “For most people, it takes years to get a diagnosis, and by the time there is a diagnosis, it’s kind of too late.”
Subsequent procedures to help her pain, Hindley said, made the condition spread from her leg to her entire body, nearly killing her.
In 2020, installation of a spinal cord stimulator and a dorsal root ganglion stimulator offered some relief, allowing her to sit up in a wheelchair, but she still has painful flare ups that can incapacitate her.
“For others, they can return to work,” she said. “So, it’s a wide range.”
Turn for the worse: While that seemed to be a turning point in her pain management, things took a turn for the worse last year that led to the amputation of her lower left leg.
“My CRPS became destructive,” Hindley said. “It can become destructive, literally burning your flesh off. Burning your bone. I was on death’s doorstep by March.”
The condition caused ulcers, osteomyelitis (an infection in the bone) and necrosis or a lack blood flow to the area that caused tissue to die. The only solution was to amputate her leg.
“Basically, I try to survive,” she said. “I’m in pain every second of the day. CRPS has taken over my life for almost five years now, but I’ve made a very strong agreement with myself that I won’t let it win in terms of there’s no cure. I don’t know what my lifespan is, but I want to give my pain a purpose.”
Sharing her experience: Hindley runs an online support group for those who are dealing with CRPS and chronic pain, as well as a YouTube channel to educate people not only about the condition but also about overall pain management.
“If I don’t share what I’ve experienced, then that’s a waste,” she said.
Because of her YouTube channel, Hindley has helped others diagnose their CRPS and understand what a spinal cord stimulator does, the different manufacturers of those devices and how it helps those in pain.
She started a Facebook support group, called Spinal Cord Stimulators: Sharing, Supporting, and Educating, where people are allowed to share their greatest successes and worst failures.
It's through the Facebook group that Shirley Stratton, who lives near the Dallas-Fort Worth area, came to know Hindley. Stratton, 74, was diagnosed with CRPS in 2001 after having bunion surgery.
"She's an advocate for a lot of people and a lot of things," Stratton said. "She's helped a lot of people just support-wise and just being there."
Learning from each other: Stratton has gathered a lot of information through the group and has been able to connect with people who live near her.
"You get little hints from other people about what things help you and what things don't help you," Stratton said.
Things like different medicines, physical therapy and doctors are topics that come up on the group, she said.
"They will private message you to give you places you can reach out to," she said. "I know that helps. I know it helped me a couple of times. I know it helps a lot of people. I see it all the time."
Stratton said the condition is not well known and until someone famous gets it and talks about it, it won't get widespread attention.
Hindley is doing her best to let people know what CRPS is all about and doesn't sugar-coat things for people who are part of the group.
“I want people to see the 360-degree view. I do not want just the sunshine and rainbows,” she said.
The comment she gets the most from the group, she said, is they learn more from being a part of the group than they do from their own doctor.
“I’m trying my hardest with what energy I have to be there for my chronic pain family,” Hindley said. “That is my family. That is my community.”