The sheer complexity of CRPS / RSD, and its highly individual nature, has dissuaded me from trying to define it here on Pain Maps. But the frequency with which I am asked about it continues to remind me how poor awareness is on this troubling condition, and I now feel a responsibility to share a bit of my take on it in the hopes of shedding light. I am certainly not without research under my belt.
Complex Regional Pain Syndrome (CRPS) – otherwise known as Reflex Sympathetic Dystrophy (RSD) – is a disorder of the nervous system characterized by severe, unrelenting nerve pain, and its origins are in the brain’s maps, or pain maps. The extent and nature of this dysfunction varies from person to person. In essence, CRPS causes a distortion or enlargement of these maps. Brain maps responsible for pain multi-task, regulating functions such as temperature, pressure, vibration, sensation of movement and sympathetic control. Given that the nature of plasticity is competitive, if a map is taken over or “pirated” by pain, its other duties suffer. This is a simplified interpretation of what I have learned.
As you can imagine, there is no exact science to how this manifests so this is where individual symptomatology comes in. The way I see it, “hard neuroscience” defines a set group of symptoms and assigns them to a box called CRPS, but this disorder falls within the realm of soft neuroscience. It’s not western-medicine friendly. Self education, and a multipronged approach, is central to healing. And that means understanding how your nervous system has gone off the rails, because it’s not going to be the same for everyone.
In my case I have dysfunction in the sensory neurons that process temperature, pressure and vibration, but how I experience that changes from day to day. My lower leg often cannot tolerate the light breeze of a fan, the touch of cotton fabric or the pressure of a pillow beneath it, so nights are long as I struggle to find sleep. The vibration of a car’s motor, on a bad day, can immobilize me for a week. When I shower, I have to ensure the temperature of the water is precisely what my foot will allow – slightly warm will inflame it, where as cool will set off a firestorm of pain. Sometimes cool water feels warm and vice versa.
The nerve cells that process my sensation of movement aren’t working properly either. I cannot do yoga, and walking has to be rationed to gradually increase tolerance or I backslide. Today, I take the garbage out; tomorrow, I might walk one block. I used to be able to do gentle swimming; now, I do ankle rolls in bath water. The trick is to calm and balance your nervous system so that you can gradually “desensitize” and tolerate what is normally healthy, like movement and exercise. Reducing stress is paramount.
Many of the sites, articles or advocacy groups I have come across on CRPS parade images of fire or brain circuitry peppered with ominous red blotches. I get it. On an average day my foot feels ablaze, or like it wants to explode; I might feel as if the skin is ripped off the sole or that I am walking on broken glass. These sensations are real and part of the pathology for all who suffer from CRPS. The problem is that thinking about, focusing on or agonizing over these sensations strengthens the connections in the brain that are feeding them, further enlarging the pain maps. And these images don’t help.
Another focus of a lot of these groups is the espousal of the mantra “there is no cure” in an effort to raise awareness and galvanize health practitioners to take action. But how do we define “cure”? Conventionally this often refers to pharmacology in some form or another, if not surgical interventions. In this sense there truly is no “cure”. But if you spend any amount of time researching how CRPS develops, you realize how utterly impossible it is to find a one-size-fits-all solution. And the term “cure”, as it is most commonly used, applies to a fix-it model that doesn’t really demand much from the patient. Not only does that framework lock us in as victims, it is pernicious for CRPS.
For these reasons I avoid the term “cure” on this site and instead use “healing”, “treatment”, “regression” or “reversal”. All of these things are within reach for those with CRPS / RSD, the means of which can be found on the pages here at Pain Maps. But they demand our active participation in the healing process, and a deep-seated belief that a life without pain is possible.
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If you have or know someone who has CRPS, I strongly recommend the book Explain Pain by Lorimer Moseley. For persistent pain in general, a fantastic resource is Neuroplastix, listed on the Neuroplasticity page of Pain Maps – most of it free. There are also plenty of other resources on this site, including videos, book recommendations and audio interviews, which can take you a long way in understanding how to begin the healing process, and a strategy that works for you.
Pain Maps is a solo venture with a zero budget in desperate need for funding. If you have found anything of value here and you are in a position to help, please consider making a donation of any size. Since so much of my energy is focused on restoring my ability to walk and trying to find work, there is little left over. Monies will go toward freeing up more of my time for research, in addition to (soon due) web hosting fees, which I currently cannot afford.