Tuesday, April 3, 2018

I Hate Cold Feet!

Kennedy’s Disease has a number of symptoms. One symptom hardly ever listed is neuropathy. Until about twenty years ago, it was never mentioned.

Wikipedia explains peripheral neuropathy as follows:

Peripheral neuropathy is the term for damage to nerves of the peripheral nervous system, which may be caused either by diseases of or trauma to the nerve or the side effects of systemic illness.

The most common form is (symmetrical) peripheral polyneuropathy, which mainly affects the feet and legs. Neuropathy may be associated with varying combinations of weakness, autonomic changes, and sensory changes. Loss of muscle bulk or fasciculations, a particular fine twitching of muscle, may be seen. Sensory symptoms encompass loss of sensation and "positive" phenomena including pain. Symptoms depend on the type of nerves affected (motor, sensory, or autonomic) and where the nerves are located in the body. One or more types of nerves may be affected.

Common symptoms associated with damage to the motor nerve are muscle weakness, cramps, and spasms. Loss of balance and coordination may also occur. Damage to the sensory nerve can produce tingling, numbness, and pain. Pain associated with this nerve is described in various ways such as the following: sensation of wearing an invisible "glove" or "sock", burning, freezing, or electric-like, extreme sensitivity to touch.

Medical News Today describes sensory neuropathy as:

Sensory nerve damage can cause various symptoms, such as an impaired sense of position, tingling, numbness, pinching and pain. Pain from this neuropathy is often described as burning, freezing, or electric-like, and many report a sensation of wearing an invisible "glove" or "stocking". These sensations tend to be worse at night, and can become painful and severe. On the contrary, sensory nerve damage may lead to a lessening or absence of sensation, where nothing at all is felt.

Today, neuropathy is more widely accepted as a symptom for many of us living with Kennedy’s Disease. Knowing about something is one thing, but living with it is something else.

Let me digress for a moment and say, “I hate cold feet!”

Neuropathy also explains why we have so much trouble maintaining our balance while standing for any length of time. The sensations are not being transmitted to the brain quickly enough for the body to respond.

One change that has bugged me in recent years is my cold feet. Until recently, I never used a blanket except a light one in the winter. I was the one that my wife stuck her freezing cold feet on when she first crawled into bed. About fifteen years ago, I noticed that I needed a blanket all year round. Even worse, my feet never seem to feel warm. In bed, I can have three blankets on my feet and they still feel cold. I now have to wear socks to bed in the fall, winter and spring. I also need an electric blanket during the winter ... something I never used before.

Guess what? Even though they feel cold, when I touch my feet, they are warm. Even more frustrating is when I know my feet are warm to the touch, I still cannot go to sleep. They ache because they ‘feel’ so cold.

Something else that has happened in recent years is I occasionally wake up with a burning sensation in the heels of my feet. Unless I rub (massage) my heels for a few minutes, the sensation will not go away.

However, I found a pot of gold at the end of the rainbow. Ten months ago, I experimented with something called “deep massage.” Every evening I massage my feet for 15-20 minutes. I wrote about it last September and again in a January blog article. My feet are still ice cold, but the tingling, numbness and pain are gone—hopefully for good.

I know—‘man-up’. Accept it and get on with life! Nevertheless, it still feels good to complain about it occasionally.

1 comment:

  1. Bruce, this post was a very helpful one as many people don't realize that KD results in sensory neuropathy along with its better-known problems in the motor neurons.

    For me, the sensation of sensory neuropathy involves a tingling, pins-and-needles feeling, exactly like saying "my foot's asleep."

    Doctors sometimes prescribe the medication gabapentin (also known as Neurontin) for sensory neuropathy, so if the home remedies such as massages don't work, it might be something one could ask one's doctor about.


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