Days full of pain for RSD patients

MARIETTA – Two years ago, Waverly, W.Va., resident Mindi Ford broke her arm.

It barely fazed her.

“I felt it snap, I heard it snap, and it didn’t hurt,” she said.

That’s because Ford has been dealing for a decade with pain that, according to the McGill pain index, is more than twice as excruciating as a broken bone, and even more severe than childbirth or having a finger amputated. Applying ice to her arms or taking a shower is agonizing, and a friendly pat on the shoulder once caused her to black out.

The condition is known as reflex sympathetic dystrophy syndrome (RSD) or complex regional pain syndrome. The cause is unknown, but it often results from a traumatic injury, sprain, fracture or surgery and causes pain in affected areas that is dramatically disproportionate to the injury itself.

Starting this year, November will be recognized in Ohio as Complex Regional Pain Syndrome Awareness Month, thanks to a bill recently approved by the General Assembly. It goes along with an effort by the Reflex Sympathetic Dystrophy Syndrome Association and folks like Ford to spread the word about the disease, generating awareness for research and for diagnosing people sooner, when the condition is more treatable.

Jim Broatch, executive vice president and director of the association, said there’s no good data on how many people RSD affects, but it’s estimated there are at least 50,000 new cases a year. Research is suggesting the cause is not just neurological but could also be inflammatory and related to the immune system.

“The evidence is starting to accumulate; there’s no smoking gun yet,” Broatch said.

Waterford resident Missy Reed, 44, is a registered nurse, but she knew virtually nothing about RSD when she was diagnosed with it four years ago. She contracted it in her left foot after surgery to repair her Achilles tendon and, as RSD tends to do, it spread to the other foot after a similar procedure two years later.

“I’ve been through two childbirths and a tubal pregnancy. And of course the tubal pregnancy was worse,” Reed said. “I would much rather go through the tubal pregnancy again than the RSD pain.”

Although she uses a combination of five medications to mitigate the effects of RSD as best she can, efforts to keep the pain from becoming even more unbearable affect even the smallest aspects of her daily life.

“I sleep on my stomach with my feet hanging over the bed,” she said. “Nothing’s touching them, so I can sleep.”

Reed said she can’t wear flip-flops to Walmart, lest the cold air from an opened freezer door send a burst of agony through her feet. And while she once held numerous track records at Fort Frye High School, she no longer runs.

“Year after year, your list of can’ts gets longer,” she said.

Both women said adapting to the pain and focusing on the positives in their lives help them deal with the pain, which is constant and sometimes flares to even higher levels.

Reed still works, something Ford, 45, is no longer able to do.

She ended up changing careers more than 10 years ago when the symptoms started. She had run a catering company, and believes the repetitive motions in which she carried heavy weights led to her contracting the disease.

“My arm was turning purple. It would just drop limp for no reason. I wouldn’t be able to hold a piece of paper between my finger and my thumb,” Ford said.

Then there was the pain.

“It really felt like my arm was in a campfire and you couldn’t pull it out,” she said.

The initial diagnosis was two conditions – carpal tunnel and thoracic outlet syndrome. An electromyogram eventually led to a doctor diagnosing her with RSD.

It was a condition she’d never heard of, but all the research she did afterward painted a bleak picture. There was no known cure, but the disease was treatable – if it was caught early, which Ford’s was not. Eventually, she got what she refers to as “the death sentence,” when “the doctors are pretty much telling you, ‘I’m sorry. There’s nothing more we can do.'”

“When you get that death sentence you mourn. You literally are mourning the death of the life you knew,” Ford said.

Ford and Reed attended Putnam Elementary School together but lost touch with each other after the sixth grade. They reconnected through Facebook, just as Reed was starting to deal with her diagnosis and recognized the symptoms Ford was describing online.

The camaraderie between them and other people living with RSD is an important part of coping.

“You can’t imagine it until you experience it,” Ford said.

It’s sometimes hard for friends and family, even some medical personnel, to grasp what an RSD patient is going through. The website for the Reflex Sympathetic Dystrophy Syndrome Association advises people who know someone with RSD to believe the pain is real, even if it doesn’t seem evident or seems out of proportion to what the individual is experiencing.

Ford said she frequently discusses her condition online, not to complain, but to raise awareness about it.

“We want people to see it, recognize it as a possibility and have it as one of the first things checked, rather than one of the last things checked,” she said.

Jolene Craig also contributed to this article.