November is sometimes referred to as “Nervember” by my friends that live with and raise awareness for complex regional pain syndrome (CRPS/RSD). Maybe you haven’t heard of it, but it still wreaks havoc in the lives of our chronic pain friends who live with it.
How Rare Is CRPS?
Even though CRPS is listed as a rare disorder by the National Organization for Rare Disorder (NORD), Medscape (an online medical website that offers continuing education for physicians and registered nurses), reports CRPS may not be as rare as once believed. This is very well due to raised awareness, such as we are doing right now.
“Enduring the pain and trying to keep it from affecting your personal and professional life, trying to deal with your emotions when you’re in that kind of pain, I’d say those are just a couple of the countless daily challenges of living with RSD.”
~Paula Abdul, Pop star living with CRPS/RSD
Complex regional pain syndrome has been referred to by several other names. They are:
- Causalgia syndrome (Major)
- Posttraumatic dystrophy
- Reflex neurovascular dystrophy
- Reflex sympathetic dystrophy
- Steinbrocker syndrome
- Sudeck’s atrophy
Though it can occur at any age, it is more prevalent in mid age and thought it can affect both men and women, it is more prevalent in females.
What is Complex Regional Pain Syndrome?
Complex regional pain syndrome (CRPS) is a very painful chronic condition characterized by severe burning pain, abnormal changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch.
According to Mayo Clinic there are two types:
- Type 1 - Also known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn’t directly damage the nerves in your affected limb. About 90 percent of people with complex regional pain syndrome have type 1.
- Type 2 - Once referred to as causalgia, this type follows a distinct nerve injury.
It’s uncertain what causes CRPS/RSD, but we do know it occurs after some type of physical trauma, such as surgery, injury, broken bones, infection, burns or other soft tissue injury. According to a comprehensive published review of the literature on CRPS in 2011, it was found that patients (90%) with CRPS have an initiating noxious event involving trauma, ischemia, or nerve compression.
Most commonly, CRPS is believed to be due to an upset in the sympathetic nervous system (SNS), a branch of peripheral autonomic nervous system that prepares us for any threat to the body’s well-being, known as homeostasis. The SNS is responsible for giving us superhuman powers in a stressful situation, such as lifting a car to free someone trapped beneath it. It allows the body to perform such feats by increasing heart rate, releasing certain hormones, constricting blood vessels, and other things that prepare the body for fight or flight. High levels of inflammatory chemicals have been found in the blood of CRPS patients and according to the National Institute of Health (NINDS) it is more common in individuals with other inflammatory and autoimmune conditions.
The Symptoms of CRPS
- Burning or throbbing pain, usually involving an extremity.
- Hyper sensitivity to touch or cold.
- Swelling of the painful area and joints.
- Joint stiffness.
- Vasomotor changes affecting skin temperature, color (mottled red or blue) and texture (tender, thin or shiny) and sometimes causing unusual sweating of the involved extremity.
- Changes in hair and nail growth at unusual speeds (too slow or too fast).
- Muscle spasms and weakness.
- Decreased mobility and function of the extremity involved.
- Tissue wasting (atrophy).
- Muscle tightening (contracture).
According to the National Institute of Neurological Disorders and Stroke (NINDS) current treatments include:
- Rehabilitation therapy.
- Sympathetic nerve block.
- Spinal cord stimulation.
- Other types of neural stimulation.
- Intrathecal drug pumps (delivery of medication directly to the space in the spinal cord that circulates certain fluids within the central nervous system).
- Emerging treatments for CRPS, such as Intravenous immunoglobulin (IVIG), ketamine, and hyperbaric oxygen.
*Hope alert! According American RSD Hope, a new medication is being investigated.
There is no specific test to diagnose CRPS; however, there are physicians that know what tests are needed to assess the effects it has on the body. If you are looking for a doctor to help you, conduct an online search of pain specialists in your area that treat CRPS.
Because of increased awareness, there is hope. Spread the news by sharing this post, it will make a difference in someone’s life.
Living with RSD, a community member copes through art
Celeste Cooper / Author, Health Pro, Advocate
Think adversity?-See opportunity!
Celeste Cooper, R.N., is a freelance writer focusing on chronic pain and fibromyalgia. She is lead author of Integrative therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain book series. She enjoys her family, writing and advocating, photography, and nature. Connect with Celeste through her website CelesteCooper.com, Twitter @FibroCFSWarrior, or follow her Facebook page.