What is CRPS?
Complex regional pain syndrome (CRPS) is a rare condition of the autonomic nervous system that causes excruciating pain in a particular body part, such as the legs or arms, and sometimes it can affect the whole body. It often develops after an injury such as a wound, broken bone, or surgery, and it can cause redness, swelling, skin hypersensitivity to touch (allodynia), and unbearable pain. Sometimes, there is no physical injury that triggers it.
People with CRPS are often willing to take extreme measures to relieve their symptoms out of desperation. CRPS is also known as reflex sympathetic dystrophy (RSD).
Why do some injuries heal and others worsen into this long-term debilitating syndrome?
Major medical centers say that for CRPS there is no clear cause and no known cure. For example, the Cleveland Clinic says on their site, “Although there is no cure, treatments are aimed at decreasing symptoms, restoring limb function and maintaining your quality of life.”
However, in our film, we follow Dr. Howard Schubiner, an internist at Ascension Providence Hospital in Southfield, Michigan, who works with a CRPS patient to help him unlearn his pain.
Can CRPS Be Unlearned?
Dr. Schubiner and other practitioners have helped a number of CRPS patients make full recoveries or experience dramatic reductions in pain. There is hope that for many CRPS patients, the disorder can be healed through brain retraining. However, it is important to note that anecdotes are not the same as data, and to date, there has been no randomized clinical research of the treatment for CRPS (although the NIH has funded studies of EAET and PRT treatments for fibromyalgia and chronic back pain, respectively).
In the video below, Dr. Schubiner explains his view that CRPS is fully reversible and discusses what happened to Tony, one of the people we filmed with over several years for This Might Hurt.
Recovering from the severe pain of CRPS may seem impossible, but there is hope for survivors. The steps involved in this framework include changing the diagnosis to "brain-induced pain," calming the nervous system, journaling, meditating, processing emotions, reducing fear, and returning to activities.
Is CRPS is a Form of Primary Pain?
Although CRPS symptoms are felt in a body part like the arm or leg, they are the result of the brain becoming overly sensitized to pain. The National Institute for Health and Care Excellence (NICE) has named CRPS as a form of “primary pain,” a category of pain associated with profound nervous system changes that are reversible. Typically, the original injury is not the cause of the ongoing symptoms. Instead, the pain is created by neural pathways that have been learned and established in the brain.
View this audio-only conversation above to hear answers to questions from members of a CRPS support group such as:
“What if my CRPS is combined with structural damage from an initial injury, is it still possible to recover?”
“What if I’ve had CRPS for over a decade—still possible to get better?”
“What if I’m in too much pain to start doing this work, or the work is too triggering and makes my symptoms worse?”
“Can this work for full-body CRPS?”
“How is the process different if I have CRPS Type I or CRPS Type II?”
Stories of Overcoming CRPS
We’ve collected stories of people who have recovered using a variety of neuroplastic therapies, all of which share in common the idea that the body is not broken, and that it is possible to unlearn pain.
Rita LaBarbera wrote an article for the RSDSA (Reflex Sympathetic Dystrophy Syndrome Association) about her experience recovering from CRPS/RSD:
My RSD diagnosis was official and more incredibly costly and unpleasant rabbit holes…ketamine infusions, nerve blocks, Calmare therapy, bisphosphonate infusions, drugs with awful side effects. I was no longer living…just existing. The RSD then spread to both knees and at one point it went full body. I was bedridden and 93 lbs. My family had to enlist help for the house and kids. It was a catastrophic situation and I was at the lowest point of my life. …
No doctor, no miracle, no pill, no treatment, was going to save me. This was an inside job. Daunting yes, but also empowering. The key to recovery of any chronic pain syndrome such as RSD is understanding the mind-body connection. You could call this knowledge therapy. Once you have read and amassed the knowledge, it becomes a matter of putting it into practice….changing chronic thought patterns. One must shift their focus from the physical to the psychological. This requires no money, but merely patience and persistence.
Rita is now recovered from pain and works as a coach helping other people overcome various forms of chronic pain.
Below are two in-depth conversations with Rita and Tamara, two friends who tell the stories of reversing CRPS.
Another person who overcame their CRPS and wrote about it is Tamara Gurin, author of the book, Defying the Verdict: How I Defeated Chronic Pain:
“I experienced two major CRPS symptoms: neuropathic pain and dystonia [involuntary muscle contractions]. … I had swelling, extreme sensitivity to cold and touch, skin on the sides of my fingers felt thin like old parchment, my hands were hot and red as if I had just boiled them, and there were white blotches on them that traveled around in weird patterns. Add neuropathic pain and dystonia – that involuntary contraction of my tendons and ligaments. Nothing matched my symptoms better than descriptions of CRPS.” (p. 52)
“Weeks went by and my dystonia only got worse. I could no longer drive more than a couple miles without stopping and resting. It appeared that driving faster than 30-35 miles per hour greatly aggravated both neuropathic pain and dystonia. Even grip gloves did not help me to hold on to the steering wheel. Not driving on a freeway made it very hard to get around in my metropolitan area. But that was not the worst of my problems. I could barely use my hands, and my arms were getting weaker; I was exhausted by pain, medical appointments, the strict diet that K. put me on, and my inability to cook even the most basic meals. I used to love my morning shower, but now I hated it because it caused me even more pain. I tried not to skip showers on weekdays, but it took a lot of willpower to do it. I was just a complete wreck.” (p. 54)
“Now… I consider myself 99 percent recovered. I am pain-free, and dexterity in my hands is fully restored.” (p. 147)
Note: check out her book to see how she pieces together a recovery plan based on neuroplastic principles.
Rita and Tamara have become friends through sharing their remarkable stories of reversing their CRPS symptoms. They launched a website that has a lot of useful, free resources.
Resources for Overcoming CRPS
If you’re curious to learn more about this counterintuitive angle on CRPS, we suggest further research on our resources page to see if the ideas resonate, taking this quiz to inquire about your unique symptoms, and looking up a healthcare professional in your area who specializes in these therapies using this online directory.
In our film, This Might Hurt, one of the people we filmed has struggled with CRPS for five years, so we got an up-close look at just how intense this illness can be. The full-length film explores the step-by-step evidence-based treatment for unlearning pain syndromes, so people have used the film as a way to wrap their heads around this new paradigm.