November is national Reflex Sympathetic Dystrophy (RSD)/Complex Regional Pain Syndrome (CRPS) Awareness Month. Today, Nov. 5 is RSD/CRPS National Awareness Day. People around the world will wear orange to bring awareness to this disease and to advocate for a cure. Currently, there is no cure for RSD/CRPS.
RSD/CRPS is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. RSD/CRPS is categorized as a neuro-inflamatory disease (N.I.D.) Another well-known N.I.D. is Multiple Sclerosis. RSD/CRPS is often very difficult to diagnose.
Minor injuries, such as a sprain or a fall are frequent causes of RSD/CRPS. This was the case for Dawn Cline, owner of Aspen Copies.
“I got it from a small fracture on top of my foot, which left me in a walking boot for about six months,” Cline said. “I passed from doctor to doctor, about 13 of them. In 2006, many doctors would not believe there was anything wrong and that it is all in our head. I let a doctor convince me that it was a bone chip in my foot, so I let him remove it. That was the last day I walked.”
The surgery to remove the bone chip made Cline’s condition much worse. Over the last years, Cline’s disease has rapidly spread within her body. “This is every day 24/7 for me. There are some good days but it never goes away,” she said.
Cline’s daughter, Amber Cline, has become an advocate for educating others about her mother’s disease. She has been interviewed for her yearbook and made posters for her school. Both Amber and Dawn are happy to talk to anyone about the disease in the hopes of increasing awareness.
“It’s as hard on my family as it is on me,” Cline said. “Our whole life has changed. It’s hard to plan our days because you never know what could happen next. We have to ready for anything that could happen. Anything can set it off. Just sitting in my wheelchair too long can cause a flare up and I’ll be in bed for days.”
“Please support a loved one, friend, collegue, or even an acquaintance that you know who may be suffering from and attempting to survive this painful and debilitating disease,” Cline urged. “Even those you don’t know need your support.”
Support RSD/CRPS sufferers and the search for a cure by wearing orange, yellow or red throughout the month of November.
“If you don’t have anything on hand, you can get into the spirit with us by making yourself an orange tag that says “I Support RSD/CRPS Awareness” or “I Hope for a Cure for RSD/CRPS,” Cline said. “Use your imagination! We’ll be thankful to you.”
Thousands around the world will wear orange Nov. 5 in support of RSD/CRPS Awareness Day. This is a little-understood disease that can be invisible because some sufferers have no outward signs of the intense pain they suffer.
The McGill Pain Scale, established in 1971, is often used to rate types of pain on a scale of severity. RSD/CRPS was previously known as Causalgia and it is under that name on the McGill Pain chart with a pain rating of 42. The amputation of a digit without anesthetic is rated 41.
“Our goal is to create more of an awareness of what RSD is,” Cline said. “Another goal is to give parents and children a place to go where there is always understanding. Each one of us has gone through weeks, months and sometimes years in trying to find information on RSD or to get a diagnosis for our friends or family members.”
“We all have or have had family and friends who don’t understand the invisible pain we endure,” Cline said. “Often, medical professional, schools and administrative staff don’t believe or understand the pain we are living in each and every day.”