The story of Guy
Guy Leach, of Oklahoma City, has been diagnosed with complex regional pain syndrome. A sprained ankle should not be a serious injury. But for Guy Leach, a technical sergeant at Tinker Air Force Base, it was life-changing.
Leach, who lives in Oklahoma City, hurt his ankle in September 2012, and the injury never went away. He continued to experience painful swelling and discoloration in his ankle, and it was painful to the touch. Rest and medication offered temporary relief, but the pain always returned. It wasn’t until 2013 that Leach’s orthopedist suggested a possible culprit behind his symptoms: reflex sympathetic dystrophy, also known as complex regional pain syndrome, or CRPS. “I had never heard of it,” Leach said. “No one I knew, no one I worked with over here, had heard of it.” According to the American RSDHope Organization and its website, www.rsdhope.org, CRPS is ranked by the McGill pain index as the most painful chronic illness. Although it is estimated that between 1.5 and 3 million Americans suffer from the incurable disease, few people know it exists. There are two types, Type I and II, both of which are brought on by injury. Type II occurs when nerve damage is present. In both cases, the disease affects the sympathetic and autonomous nervous systems. Nerves from the affected region fire off constant pain signals to the brain, making the person feel pain where no injury exists. CRPS can cause extreme sensitivity, burning sensation, swelling, tingling, discoloration, skin changes and restriction of the range of motion in the affected area. Over time, it can spread to other parts of the body and is exacerbated by stress, activity or future injury. “I used to hike and work out all the time,” Leach said. “Now, I’m lucky if I can get through Walmart. Physically, everything’s slowed down.”
Finding support
For Leach, one of the hardest things was being the only person he knew who was struggling with the disease. In October, he set out to find others with CRPS. He found Tracy Jones, a woman in Mustang who had received her CRPS diagnosis years earlier. Jones had tried to establish a support group but due to the severe nature of her CRPS was having trouble doing the work to get the idea off the ground.
Now, their Facebook support group includes dozens of people in the state. In addition, people from around the world, including South America, Israel and New Zealand, have reached out to the Oklahomans. In between monthly lumbar sympathetic block injections to treat the pain, Leach has been pushing heavily for CRPS awareness. So far, the group has been successful in promoting the cause. Its efforts led Gov. Mary Fallin to declare November CRPS Awareness Month. On Nov. 3, the Skydance Bridge over the Oklahoma River was lit orange, the color of CRPS awareness. The next step in the group’s plan is to seek passage of a bill that would be named the Complex Regional Pain Syndrome Education and Research Act that would mandate doctors get training to recognize the disease so their patients can receive a prompt diagnosis and get treatment early enough to send the disease into remission. “There are people who are still trying to figure out what they have,” Leach said. “They could be going years and years and undiagnosed because their doctor has no idea what is causing their symptoms.”
To learn more
For more information on CRPS or the support group, go to the Oklahoma RSD/CRPS page on Facebook or go to oklahomarsdcrpssupport.com
http://newsok.com/oklahoma-city-man-with-rare-disease-raises-awareness/article/5381966/?page=1