Tuesday, September 20, 2011

Cold Feet!

Kennedy’s Disease has a number of symptoms. One symptom that is hardly ever listed is neuropathy. Until a few years ago, it was never even 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 sever. 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. I hate cold feet!

cold feet

One change that has bugged me in recent years is my cold feet. I was the one in the family that didn’t use 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 eight years ago I noticed that I needed a blanket all year round. Even worse, my feet never seem to get 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? If 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 because they ‘feel’ cold.

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

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.

I know ... ‘man-up’ ... accept it and get on with life! But that doesn’t mean I still can’t complain about it occasionally, right?


  1. Hi, thanks for your blog...you mentioned (/implied how some people have) the attitude of "man up", accept it, etc but i've found that usually people who say that (about anything in life) have never been through the problem themselves and if they DO go through it at a later date they are fast enough to complain:)If we're suffering I think we're entitled to complain and it can help us process the thought/emotion and get the help we need too, and we soon find out who our real friends are when we say what is troubling us, and who needs friends who are only there when we say things are fine anyway?:) Give me one good friend I can tell my troubles to safely and who wants to make sure I am ok over a million friends who only want to hear I'm happy, anyday. Good luck with everything. Best wishes from Rolland.

  2. Hello- My dad was recently diagnosed with ALS, he has seen 2 specialists and they are both puzzled by his progression, they said he is progressing very slowly and he is physically so strong for someone with AlS. He has had 3 EMG and they do see muscle weakness. I don't think they have tested him for Kennedy disease, what exactly is a DNA blood test, is it different from a regular blood test? Any information would be helpful. Thank you!

  3. Amanda, the DNA test is the only sure way to determine if your father has Kennedy's Disease. His doctor will draw some blood and send it to a DNA testing lab for analysis. It usually takes 2-3 weeks for the results. The test for Kennedy's Disease counts the number of CAG Repeats. If they are less than 36, no KD is evident. I believe 36-39 is called borderline. 40 and above is KD. The higher the CAG repeats the earlier the onset. You can read more about the test here: http://www.kennedysdisease.org/index.php/about-kennedys-disease/dna-testing-labs . Should you have any other questions, please don't hesitate to ask or drop me an email.

  4. Interesting.
    I have have feet that feel freezing but do not feel cold.
    Also, if I get out of bed in the night and walk around, within 20 minutes the bottoms of my feet are SO itchy i have to SCRAPE them REALLY HARD with a spoon or other metal object to get relief.
    i HAD thought this was some delayed sensitivity reaction of some sort but now I wonder...
    I did do the involuntary split on wet grass 10 years ago when chasing an injured duck, at the time I had immediate loss of control of one leg for about 20 mins, wonder if I did physical damage to the sciatic nerve, but the problem is bilateral.

    1. Hey i fully understand what you going through i havw had painful feet for the last 12 months with no sign of any help from a consultant how arr you getting on now

  5. Please help!' My feet always feels
    Like they are freezing it is horribly uncomfortable. When I touch them they do t always feel cold but sometimes
    They do. My Brain always says my feet are cold I have had EMGs and they came back good I have had neuropathy testing and that has came back negative The doctors are saying there's no problem But something is definitely wrong my feet always feel cold in my head and then when I touch them they are warm It's so frustrating and so uncomfortable I cannot figure it out help Any comments will be greatly appreciated

  6. I have Parkinson Disease and low back pain & issues for years , ruptured disk 3 years ago ...
    My feet , especially when in bed or lying down on recliner feel like an ice block but are warm to the touch!!
    There was an EMG and another test (forgot name ) for muscles and nerves done, all is normal , not Neuropathy I was told! My Neurologist says it is probably Parkinson! Which I was diagnosed 6 years ago and only for the last year about I got these cold feet feelings!
    Any comments, suggestions?
    Thank you

  7. It is frustrating and uncomfortable. Most people will never understand the sensation - especially when trying to relax and go to sleep. Something has has helped me a little is the evening foot massage. You can read about it here: https://kennedysdisease.blogspot.com/2017/09/unexpected-benefit.html . It hasn't corrected the problem, but it seems to help. If you ever find out what is going on, please let me know.


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