Meghan Bayer, a taekwondo instructor and college student in Pittsburgh, Pennsylvania, is affected by Complex Regional Pain Synrome (CRPS). On her blog, Meghan writes about the many ways she copes with and powers through her condition. Here on The Written World, she shares her experiences.
In the prime of her life, young Nicole Hemmenway was stricken with a rare and exceedingly pain chronic pain disorder called Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS). In her book, No, It Is NOT in My Head! The Journey of a Chronic Pain Survivor from Wheelchair to Marathon, Hemmenway shares her struggle with the healthcare system to obtain a diagnosis, a process that took years, to receive a treatment that works, and the fight to get out of a wheelchair.
From the first shaky steps with assistance to her first marathon, Hemmenway shares her journey from a desperate RSD/CRPS sufferer to a victorious RSD/CRPS survivor. Although she will likely never be pain-free, she has successfully learned to navigate the painful symptoms of RSD/CRPS to live a good life.
Complex Regional Pain Syndrome (CRPS) is a rare, under-diagnosed, neurological pain syndrome. First noticed during the American Civil War, it is characterized by constant, neuropathic pain that is generally described as burning, hypersensitivity to touch (allodynia), and/or hypersensitivity to pain (hyperalgesia). A few signs and symptoms are swelling, changes in skin temperature, color or texture, and changes in hair and nail growth. Severity varies from patient to patient, and symptoms may differ from minute to minute. There is no FDA-approved treatment for CRPS. To alleviate symptoms, patients may participate in physical, occupational, and aquatic therapy, take medications, and undergo ketamine infusions, all with varying amounts of success. There is no cure at this time.
A RSD/CRPS fighter myself, Hemmenway’s book inspired me to launch my blog and informative website, The CRPS Ninja Chronicles, in March 2015, after 3 years of fighting. Over the last 2 years, I’ve used it to generate awareness, inform others, and share articles, pictures, and videos about my experiences.
As a 2nd Degree Black Belt-R and taekwondo instructor, I spend my days fighting CRPS and its comorbid, or simultaneous, conditions through physical activity. This improvement of my physical and mental resilience has been vital in learning to live with the most painful condition known to modern medicine, which is rated higher than cancer pain, amputation without anesthetic, and childbirth at 42/50 on the McGill Pain Scale.
For more information, check out the The CRPS Ninja Chronicles website or Nicole Hemmenway’s book, No, It Is NOT in My Head! The Journey of a Chronic Pain Survivor from Wheelchair to Marathon, available on Amazon.com.