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Tuesday, August 8, 2017

More on Pain

I have been in pain for about ten days. I am functioning reasonably well but tired. Nights are the worst as I toss and turn. I cannot fall asleep with a blanket over my body as the added weight makes the pressure on my hips hurt. I turn from my left to right, lay on my back in a non stop rotation. I am comfortable no longer than two hours. Interrupted sleep is my norm. The pain I experience takes many forms. One can hurt in small and large ways. Pain can be severe or mild. Thankfully I would put my pain squarely in the mild category. For most, physical pain can be managed. For those with complex pain, specialists exist. These physicians astound me. I have seen how pain can be managed with skill and nuance. Despite great advances in pain management there is still disagreement over wether all pain can be alleviated (especially at end of life). The sort of pain I experience is called neuropathic pain. The American Chronic Pain Association defines neuropathic pain as follows: 

Neuropathic Pain is a complex, chronic pain state that usually is accompanied by tissue injury. With neuropathic pain, the nerve fibers themselves might be damaged, dysfunctional, or injured. These damaged nerve fibers send incorrect signals to other pain centers. The impact of a nerve fiber injury includes a change in nerve function both at the site of injury and areas around the injury. 
Neuropathic pain - otherwise known as nerve pain - is a type of chronic pain that occurs when nerves in the central nervous system become injured or damaged. If you or someone you care about has nerve pain, you know that it can erode quality of life. Link:
My spinal cord is damaged and dysfunctional. As a result, it regularly sends incorrect signals throughout my body below my level of injury. Adding further dysfunction is a healed wound on my right hip. The nerves at the wound site have grown back but are as damaged and dysfunctional as my spinal cord. Neuropathic pain is thus part of my life. Unlike, post surgical pain, there is not much one can do about neuropathic pain. In my experience, little can be done to ameliorate my pain. The only thing that has helped has been topical cream on the site of my wound, CBD oil and THC found in medical marijuana. It is impossible to describe the pain and spasms I experience. When others think of pain they think post surgical pain. A good example would be orthopedic surgery such as any number of surgeries for injuries an athlete experiences or hip and knee joint replacement. Pain following the extraction of a tooth is equally commonplace. This sort of pain is easily quantifiable. Enter any hospital and on the wall one is likely to see a chart about the pain level on a scale of one to ten. None of this pain is remotely like what I experience. Pain is not localized and often a wound on my skin does not hurt at the area of injury. I regularly feel pain in parts of my body that should not be hurting. A skin breakdown on my right side can cause a burning sensation on the opposite side of my body. Sometimes I feel pain hours after I have injured myself. I can, for example, debride a wound and feel no pain. However, six to eight hours later I can feel significant pain where I worked on the wound.
People that experience sciatica have an inkling of the sort of pain I experience. I should emphasize opiates that relieve pain following surgery are useless with neuropathic pain. In reading Oliver Sacks recent autobiography, On the Move, he wrote about pain he experienced following knee replacement surgery. The morphine he took during rehabilitation was highly effective. The pain from sciatica Sacks wrote was radically different:
It was not a predictable response to the stimulus of stretching, as the knee pain was. Instead, it came in sudden paroxysms that were quite unpredictable and could not be prepared for; one could not grit one's teeth in advance. Its intensity was off the scale; there was no quantifying it; it was, simply, overwhelming. 
Even worse, this sort of pain had an affective component all its own, which I found difficult to describe, a quality of agony, of anguish, of horror--words which still do not catch its essence. Neuralgic pain cannot be embraced, fought against, or accommodated. It crushes one into a quivering, almost mindless pulp; all of one's powers of will, one's very identity, disappear under the assault of such pain.  

Sacks perfectly describes the sort of pain I experienced as a child. He is correct in that there is no way to describe its essence. One can indeed be reduced to a pulp. The pain I experience is a constant part of life. During the day, pain is not a variable. As I sit at my desk I am too busy to think about pain. Over the years I have learned cold is the best remedy for pain. A walk in freezer is ideal and on more than one occasion I have snuck into huge supermarket freezers. Pushing long distances helps as does using my handcycle. In fact, post handcycle ride my pain level is non existent and spasms are virtually absent. What does not work? Alcohol, opiates, and any sort of depressant. No standard pain relief medication I have ever taken has worked. What is really needed is an original and novel spinal cord injury pain taxonomy. Our understanding of neuropathic pain post SCI is woefully inadequate.  I often wonder if the advances associated with phantom limb pain post amputation may have applications to people such as myself. Regardless, I am lucky. Pain does not impact my life in a measurable way as it waxes and wanes over time. For now I am in a cycle of pain. Tomorrow could be better or worse. I just don't know. One never truly knows the direction of neuropathic pain. One simply must let such pain wash over the body and let it tun its course. For the present I will embrace my inner zen and hope tomorrow is a better day.