Mary Fran Wiley, a 32-year-old web designer from Chicago, has been diagnosed with complex regional pain syndrome, a rare disease that often develops after an injury and leaves patients in constant, intense pain that spreads over the affected area. The exact trigger is unknown and there is no cure. After suffering for years, Wiley found new strength by taking up dance. She's starting hope.dance, an organization to create dance classes tailored to people with pain disorders. Wiley shared her story with TODAY's A. Pawlowski.
I’m not willing to let the pain take away my life anymore. Whenever it was bad, I would just stay home. I missed out on a lot of stuff with my friends and I’m not OK with that happening again. The more I can dance, the stronger I am. Dance gives me a chance to move and be free.
Before this happened, I had no health issues at all. I was running four miles a day; I had just lost 100 pounds.
In July of 2009, I was running a 5K along the lakefront in Chicago. Just shy of the first mile marker, I stepped down wrong and twisted my left knee. I walked the rest of the race.
I thought it was just a minor twist. When it wasn’t better in a month, I saw an orthopedist. There were knee MRIs and X-rays. They found some tendon issues, so I had physical therapy, but the pain was getting worse, not better.
When they could find nothing structurally wrong anymore, the orthopedist sent me to a pain specialist. They tested whether or not my nerves were actually firing, which might be the most painful medical test ever invented — ENG (electroneurography). They send an electrical current along a nerve to see if it’s still functioning.
I could still walk, but I was in constant pain. I stopped wearing pants so they didn’t rub against the leg. Moving made it worse. Sitting totally still made it worse. My left leg was swollen and it was a different color, reddish-purple.
In 2010, almost one year after the running injury, I was diagnosed with complex regional pain syndrome.
The nerves in my leg are always confused. They think every input is pain. They’re misfiring. In response to that, my body changes the circulation in my leg, which is what causes the swelling and the change in color.
It feels like somebody has lit my leg on fire and is stabbing it at the same time. It’s the most painful thing I have ever felt.
CRPS can start from really minor injuries, like my twisted knee. It heals, but your body still thinks it hurts.
I can't do a lot of things that people take for granted — carrying my laundry down the stairs or taking the trash out. I ended up living with my parents for a while. I later moved in with roommates. I try to live as independently as I can, but it’s not always possible.
I have tried just about every treatment you can do here in the U.S.
I did a series of epidural lumbar sympathetic nerve blocks. They helped a little bit.
I’ve had three epidural infusions and I use a spinal cord stimulator. There’s a battery just above my left hip in the back and then wires that run into my spine. Their goal is to interrupt that nerve signal from my leg to my brain. The first one did not work. The new one helps a little bit.
A physical therapist suggested that I get a cane to make it easier for me to get around.
I felt like I was a prisoner in my own body. My medications caused weight gain, which is the worst. I really just wanted to do something other than go to work, go home and go to bed. I was bored.
Last year, after my third epidural infusion, I was finally feeling good enough to try to be active again. I asked my doctor about a few of things I could try: yoga, spin class and Irish dancing — because Irish dancing is on my bucket list.
He was worried I might push myself too hard. So he suggested that I do ballet.
When I first tried ballet, I was terrified. I had no idea what to expect. I hadn’t taken ballet since I was little. But I started following along, and every time we did a new step, I got more and more comfortable.
I found out adults can take classes at Joffrey Ballet. I emailed them about taking class and I got an enthusiastic reply. I’ve been taking that class for a year and a half. Now I do ballet and tap, eight classes total every week.
In yoga, they always tell you, you need to sit and clear your mind. But all I can think about is my grocery list and how much my leg hurts. In ballet, you have to think the whole time: pull this muscle, support your body from here, push your weight forward. So for that hour and a half, I get a break from the real world.
I’m in a lot of pain when I dance. It takes a few hours to go back down to normal. But because of dance, I have much more strength, better balance, better spatial awareness, I’m less clumsy. For the most part, I don’t use the cane anymore and I credit dance for that.
I’m watching clinical trials going on now for medications for this disease. If they pass, I’ll be the first person in line to try them out. And I’m going to keep dancing.