CRPS-ers! What would you do, if you could do anything?

From National Pain Report, 9/9/2013Originally published on Casey Mullins' blog Moosh in Indy, 8/29/2013

Sheila and Dave

My Story: I Would Run!

September 9th, 2013 by David Hert

I had never heard of Complex Regional Pain Syndrome (also known as Reflex Sympathetic Dystrophy or Causalgia) before my wife Sheila was diagnosed with it earlier this year.

In April of 2013 her big toe went numb for no apparent reason. The numbness, accompanied by weakness, quickly spread up her leg until her entire right leg below the knee was rendered useless. Within about 10 days the pain set in.

She was diagnosed with CRPS in May and she passed away on July 29th, 116 days after her toe first went numb.

CRPS is a rare nerve condition that often goes undiagnosed for months or even years. Symptoms include abnormal sweating, changes in skin temperature and color, softening and thinning of bones, muscle twitching and tremors, wobbliness, falling, visionary disturbances and severe pain. Sheila suffered from all of these.

We’ve all experienced pain. It is part of being human and it serves a very specific purpose most of the time. CRPS inflicts a level of pain that most of us can’t comprehend and will never experience.

The McGill Pain Index ranks CRPS as the highest level of pain possible for any chronic condition. CRPS ranks significantly higher than cancer, fractures, unmedicated child birth and even amputation of a digit. The pain from CRPS never goes away and pain medications are almost useless.

The pain my wife experienced was so severe it prevented her from wearing shoes, socks or pants. She couldn’t submerge her leg in water and even a light breeze could bring her to tears.

Initially my wife would try to explain to people how bad her pain was. People were sympathetic, but they really didn’t understand. There was no effective way for her to accurately explain the amount of pain she was in. Her leg would appear red and swollen at times, but usually looked to be relatively healthy.

A former roommate of ours even accused Sheila of faking her condition in order to get workers compensation, even though compensation of any kind was nothing that she ever pursued.

Sheila eventually stopped trying to get people to understand. She just put a smile on her face and tried to hide her pain from everyone.

It is estimated there are between 1 and 3 million people in the United States who suffer from CRPS, 75% of them women. The majority of victims develop the disease in their 30′s and 40′s, but it can hit anyone at any age.

CRPS is usually preceded by an injury or some kind or surgery. There is no cure for CRPS and treatment results vary greatly from patient to patient. Sheila’s form of CRPS was one that did not come with a favorable prognosis. We tried a number of treatments and nothing seemed to bring her relief.

My wife’s doctors, and there were many of them, didn’t know what to do. Some of them had heard of CRPS, but most had no idea how to treat it.

We had read of promising results using the drug ketamine. We specifically asked for it, but when we finally found a doctor that agreed to treat her with it, our insurance company refused to help with the expense. Ketamine is used as a recreational drug and it’s very difficult to find doctors that will use it and insurance companies that will pay for it, despite reports of positive results.

They instead handed out narcotic painkillers like they were candy. Our insurance company had no problem paying for these.

On Monday, July 29th I came home from work and found my wife unresponsive on our couch. She had passed away in her sleep from an accidental prescription drug overdose. She was 32 years old.

Sheila and I were very active before she got sick. We completed many half-marathons together, mountain biked, snowboarded and were at each other’s side on a variety of other adventures. Sheila was a young, vibrant, healthy, beautiful wife and mother of two daughters. She was in the prime of her life.

When asked what she would do, if she could do anything, Sheila said…

“I would run! I would run as far as I could, to the middle of nowhere, and then run home. Or, I would ride my mountain bike in Moab, all day, everywhere possible. Or I would swim. I’d swim laps until my muscles were so weak I couldn’t stand.”