9 years out and getting worse. Right this moment, my feet feel like there is a rubber band, 1.5″ wide, over each foot, starting at the base of the toes. If you would have such a rubber band, you would not be able to feel the texture of the floor.

The pain has several features. Right now, my feet feel very cold. I cannot do anything to relieve that, including warm socks, blankets, water, heating pad, or massage. When these materials are touching my feet, I feel less pain, but only because of distraction. The instant I take my feet away from the source of the warmth, I go right back to the original, cold feeling. I think many of us need to be careful about how he describe our pain to others. In reality, my feet are not cold, they just feel something like being cold. The cold analogy is a way of explaining some feeling that is unique, that I have never experienced in the past, to someone who has also never experienced this. No matter how “cold” I describe my feet as being, when I or anyone else touches them, they feel like they are the same temperature as any other part of my body.

Another type of pain is the sensation that I am wearing socks and walking on gravel. These sensation is present even if I am at rest, to a degree. But when I stand or walk, it is torture. I list when I walk, as if I am trying to steer my body away from the sharp objects that I feel that I am walking on.

There is also a very general feeling of standing in a wading pool with a mild electrical charge pulsing through my legs. This is sort of like that creepy crawlie funny bone sensation that has no precise location. It is below my knees, but cannot be more specific. Here is a weird way to explain it: this sense of pervasive discomfort feels as if it is happening not just to my legs, but to an area around my legs. It is as if there is a bubble of pain that begins 30 inches around my legs.

So far, what I have described is always symmetrical. I also have a pain that feels as if someone takes a pair of pliers or channel locks and squeezes one of my toes. There is no relief for this. Rest, massage, nothing changes this. Another feature is that it moves. It is the third toe of my right foot at this moment, but was the big toe earlier this morning. It is usually on the right foot, but does happen less frequently on the left foot.

I’ve tried two neuro docs lately who have done a nerve conduction study. They both conclude that IVIG is not called for.

I have tried a number of things. The best relief is from opiates. I’ve been taking these for 9 years, and, of course, I have developed a tolerance. I also take amitriptyline and sertraline. The effectiveness of Gabapentin and Lyrica was not that great, and the side effects were zombie-like. I don’t take these anymore. All of my meds are managed by my primary doc, who consults with the neurology and pharmacology departments in my hospital, a large, university type. I see the Mayo Clinic sometimes, but recently they told me there was nothing more that they can do.

I’m a university professor and still teach full time, by choice. I have talked to the administration about disability or reduced hours. The financial aspect looks pretty good, but I am going to hang on until the screaming end.

I get cramps in my upper thighs, close to where they become part of the trunk. These a intractable at times, as I cannot find a position that will help me stretch the upper thighs. As a preventative, I take vitamin D. My own little experiments have found the aerosol spray Salonpas Jet Spray has been very helpful in relaxing the cramp. By the way, my cramps are in the legs, and never above the waist. They are nearly always symmetrical.

larry