By Jessica Mendes, Guest Columnist
There is no shortage of books, articles, research projects and other initiatives dedicated to raising awareness or finding treatments for chronic pain. And rightly so. According to the American Academy of Pain Medicine, a recent market research report indicated more than 1.5 billion people worldwide suffer from it.
What we are sorely lacking in is education about pain, and how “patient as agent” is critical to avoiding a lifetime of disability. By this I mean public discourse to promote initiative and understanding on the part of the person afflicted with pain; including their participation and engagement in their own healing process.
This is an assertion I am fully qualified to make. A year ago I stubbed my toe; now, I am fighting for my ability to walk. I have Complex Regional Pain Syndrome (CRPS), and if this condition was better understood, especially among health practitioners, I wouldn’t be where I am today.
Luckily, I am not lacking initiative. It didn’t take me long to realize that mainstream medicine had nothing to offer me, so I committed myself to research. The sheer complexity of CRPS and its highly individual nature makes it very difficult to define, let alone treat. But the frequency with which I am asked about it continues to remind me how poor awareness is of this troubling condition. I feel a responsibility to share my take on CRPS in the hopes of shining more light in it.
CRPS – also known as Reflex Sympathetic Dystrophy (RSD) – is a disorder of the nervous system characterized by severe, unrelenting nerve pain. 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 also regulate other bodily 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 also 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 actually falls within the realm of “soft” neuroscience. It’s not western-medicine friendly.
Self-education and a multi-pronged approach are central to healing from CRPS. 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, whereas 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. Today, I may 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 websites, 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 for 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” 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 a website I created called Pain Maps. But they demand our active participation in the healing process, and a deep-seated belief that a life without pain is possible.
Jessica Mendes is the founder of Pain Maps, an online resource center dedicated to neuroplastic approaches to healing pain and neurological dysfunction. It offers material, sources and ideas that enable non-invasive, drug-free options to reducing nerve pain while exploring new dimensions in the narrative of neuroscience.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.