By Jonathan Pilcher
Imagine a medical condition where a hug, an autumn breeze or even contact with one’s clothes could cause crippling, searing, red-hot pain. This is what people with Complex Regional Pain Syndrome deal with every day.
First documented in 1864, Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, is a severely disabling, degenerative, chronic neuro-inflammatory disorder. It often develops following an injury where the pain far exceeds the nature of the damage and does not subside after healing. Complex Regional Pain Syndrome can also develop without a clear injury.
Given the perplexing characteristics of this disease and the many years since its documentation, you’d think it would be well-known, however most people, including clinicians, have never heard of it.
That is why over 200 people gathered Sept. 29 at McAlpine Creek Park for Fight The Flame’s seventh annual 5K and 1K Family Roll and Stroll. Most of those present participated in the run or walk while others cheered from the sidelines or visited one of the many educational or sponsorship booths.
One such booth challenged those without Complex Regional Pain Syndrome to hold their hand under ice-water for two minutes, which loosely simulated the pain a person with Complex Regional Pain Syndrome feels 24 hours a day.
Students from Queens University, UNC Charlotte and Providence High School arrived early to help set up and check in runners.
Fight The Flame was started by a 12-year-old who wanted to help others understand the condition his mom has managed since 1996. The seventh annual 5K raised over $26,500, bringing the total donations from Fight The Flame to $164,000.
These funds have allowed Fight The Flame to contribute toward further research and awareness of Complex Regional Pain Syndrome, create high school scholarships and sponsor a thermography lab.
Fight The Flame remains active year-round in providing support for individuals and their families. Monthly group meetings are held to discuss topics such as traveling with pain, getting through the holidays and helping family and friends understand the lives of those with Complex Regional Pain Syndrome.
Jonathan Pilcher is a health communication major graduating in December 2019 from UNC Charlotte. He is interning with Fight The Flame, which has helped him not only achieve real-world experience but also learn ways to better manage his own chronic pain condition, Occipital Neuralgia. After graduation, he plans on continuing his work with health organizations.