Complex Regional Pain Syndrome (CRPS) also known as Reflex Sympathetic Dystrophy (RSD), is a degenerative neurological disease.
CRPS typically begins from an injury such as a sprain, fracture, or injection, and even after the injury heals completely, the area becomes swollen, changes colors, changes temperature, the skin becomes shiny and peels, and pain is excruciating– debilitating.
CRPS can create systemic complications throughout the body. Constant pain signals are sent to the brain, 24/7.
The pain is described as burning, electrical, zapping, searing, ice cold, deep aching, and bone crushing all at one time.
Even though we might feel pain in one limb at first, the disease actually “lives” in the entire nervous system and brain. That’s why invasive procedures, surgeries, and major car accidents are higher risk of spreading for those of us with CRPS/RSD.
In the early stages, we may only feel pain in a hand or foot, but the condition can spread to another part of the body or throughout the entire system.
RSD/CRPS has been coined the “suicide disease” because for many, it has become impossible to live with the extreme pain.
Because each person is so unique, treatments respond differently in everyone. It has proven to be very resistant to treatment. Everyone has to find a balance of treatments that work for them.
A combination of traditional medical, alternative, natural, intermittent physical therapy, and a variety of at-home pain management coping tools seem to be a standard grouping for long-time survivors.
Because it’s a rare disease, it can take several years to find a diagnosis, then longer to find a team of doctors who know how- and are willing to treat it.
CRPS/RSD is ranked as the most painful condition on the Mcgill Pain Index.
It is more painful than unmedicated childbirth, cancer pain, fracture or amputation.
Early diagnosis and treatment hold the best possible outcome. No matter when you are diagnosed or what stage you’re in, there is ALWAYS hope!
If you see these symptoms developing after injury in a loved one, please see a doctor immediately, and ask about RSD/CRPS.
Complex Regional Pain Syndrome (CRPS) also known as Reflex Sympathetic Dystrophy (RSD) is a chronic degenerative neurological disease affecting both the Autonomic and Central Nervous Systems- specifically, the Sympathetic Nervous System.
In response to damage from physical 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.
CRPS is very similar symptomatically to conditions like Multiple Sclerosis, Parkinson’s, and Lupus. In fact the majority of people with CRPS will be tested for MS at least once because symptoms like tremors, spasms, muscle weakness, dizziness/vertigo, brain fog/cognitive distortion, fatigue, insomnia, and autoimmune dysfunction are just a few of the symptoms common to both people suffering from CRPS and MS.
Additional symptoms associated with CRPS may include swelling, skin changes, pain upon touch (allodynia), abnormal hair or nail growth, discoloration, stiffness, atrophy, bone, tissue, 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 about how the author of aBodyofHope blog lives with RSD/CRPS, how people cope, and find inspiration here.