Complex Regional Pain Syndrome (CRPS) also known as Reflex Sympathetic Dystrophy (RSD) is a chronic condition of both the Autonomic and Central Nervous Systems, specifically, the Sympathetic Nervous System. In response to damage from trauma, (musculoskeletal injury, a nerve injury, surgery or immobilization) nerves misfire, sending constant pain signals to the brain disproportionate to original injury. The pain is constant, intense, and is often described as electrical, searing, burning, jolting, crushing, sawing, squeezing, and freezing. CRPS/RSD is thought of as both a neurological disease, as well as an autoimmune disease, and mimics disorders of many other conditions making it difficult for doctors to diagnose. Although there are many body wide symptoms, the over=riding complaint of CRPS/RSD is PAIN.
Additional symptoms associated with CRPS may include swelling, skin changes, pain upon touch (allodynia), abnormal hair or nail growth, discoloration, spasms, tremors, stiffness, atrophy, bone and muscle loss, dystonia, and CRPS/RSD can be both debilitating and progressive. CRPS usually affects one or more of the four limbs but the pain can spread to any part of the body including the organs and brain in the later stages.
Managing CRPS requires patient-centered, interdisciplinary, coordinated care, pain reduction for optimal functioning and quality of life management. Treatment may include medications, counseling, specialty referrals, Physical Therapy, Occupational Therapy, interventional procedures, infusions, medical devices, alternative therapies, and more.
Anywhere from 200,000 individuals to an estimated 5 million are living with Complex Regional Pain Syndrome. For now, it is still designated a “rare disease” by the FDA, however because of the huge online community, over the last decade, awareness efforts have made “RSD” or “CRPS” more recognizable to the mainstream. Because it is still considered a rare disease, most doctors haven’t treated patients with it. Pain Management Specialists, Neurologists, and Sports Medicine Doctors/ Physical Therapists will be most familiar with diagnosing and treating this condition.
Earlier treatment can lend to a better outcome for remission and management. Research shows that taking Vitamin C reduces incidence of contracting CRPS after a sprain or fracture.
You are not alone.
Online Support Groups:
www.crpsadvisory.com This website has an abundance of resources and information for the newly diagnosed RSDer or family member.
THBlack.com Daily articles dedicated to CRPS/RSD, listing of websites, and a list of online support groups.
RSD/CRPS Doesn’t Own Me Informative articles, helpful volunteers, and listing of local support groups.
RSDSA Foremost research and funding organization in the US dedicated to chronic pain, CRPS, and RSD. Find amazing resources, articles, listing of doctors, support groups in your area, fundraising instructions for RSD marathons and other fundraisers, and so much more.
RSDHope This non-profit is a long standing respected organization whose website has research articles, fundraising information, RSD items available, and much more.
Read much more about how the author of aBodyofHope blog lives with RSD/CRPS, how people cope, and find inspiration here.