A thorn in the flesh

Chronic cryptogenic small fiber peripheral sensory neuropathy. It is quite a mouthful and most people have never heard of it. I have a special interest in it. You see, I have it. There is nothing like having a condition to stimulate an intense personal interest in it. The problem first began when I was training for my third Disney Marathon in 2005. After some long runs I began having pain along the outside of my left knee and, soon thereafter, started to have numbness in my left foot. For a while, I ignored it as only an otherwise supposedly intelligent person, and a doctor to boot, could do. Eventually, though, I had to do something.

I wore a band above my knee for the iliotibial band syndrome causing the knee pain. I got orthotics for my running shoes and some physical therapy for a presumed obturator syndrome. I kept running, though. After Disney, I ran the Boston Marathon 4 months later. By now, both feet were experiencing numbness. Wising up at last, I finally stopped running, saw a physical medicine specialist who ordered nerve function studies (essentially normal) and embarked on a lengthy program of stretching, physical therapy, ice, and laser treatment. Nothing really helped.

Fast forward nearly 7 years. I live every day with an uncomfortable sensation of numbness, tingling, pain, and burning in both feet. The left is still worst. It is such a part of my life that I immediately notice those few periods of a few hours here and there when my feet feel normal. Once or twice, the symptoms vanished for up to 2 days and I had a brief moment of elation thinking, “this is it, I’ve gone into remission!”. No such luck, though.

Two years ago, I saw a neurologist at the University of Miami who specializes in this problem. After a number of tests, all normal, he told me that I had the problem named at the top of this post. The “cryptogenic” refers to the fact that the cause is unknown. It occurs most often in people around 60 and older- another of the wonderful aspects of getting older. He said that if I were 2 inches shorter, I would have no symptoms, as these are related to the length of the nerves.

The good news is that it will probably not get worse. Even if it does, it will be very gradual and I will likely be dead of something else before I have any serious problems. Another piece of good news is that I probably did not get it from running, all those problems of 2005 notwithstanding, and can continue to run, even if it is uncomfortable at times. The bad news is that I will likely have it for the rest of my life. He did not recommend treatment as the drugs used have side effects worse than the condition itself. I can smear capsaicin (the stuff in peppers that makes them hot) cream on my feet. The burn from that will overwhelm the burning in my feet and eventually make those particular nerve fibers inactive.

At first, I thought, “I take care of myself, don’t have any bad health habits, and there is no one with this in my family. Why me”? Then it occurred to me that a better question might be “why not me”? After all, millions of people have terrible health problems that I do not have. What makes me special? I do know that it has made me more spiritual. After all, if the Apostle Paul had a “thorn in the flesh”, why shouldn’t I? Having a constant reminder of my age and the limitations of my body has made me more appreciative of my otherwise excellent health and thankful that I can do most anything physical that I wish to do. I now regard this neuropathy as background static in my life, something I am aware of, annoying but able to be ignored if I keep my mind busy and focus on other things. In some real ways, it is a blessing, although not necessarily one I would have asked for.

Ironman training log:

I have taken a small step back due to a number of factors. My plate is full, the holidays are rushing like a freight train, and there is much to do at work and at home. I am working on the mental aspect of organizing and preparing myself for the year to come, something I find more difficult to do than any physical training. Just bought some aero bars for the road bike- I have decided not to use a tri bike due to the expense and the fact that I do not plan to do the type of riding for which this bike is designed very often. Am getting the bike refitted for these bars. Meanwhile, I am talking to Carmichael Training Systems for possible coaching assistance. More on that later.

This week’s summary:

Swim- none

Bike- 30.43 miles at average of 15 mph. Training effect 3.0

Run- None