Temperature regulation with multiple sclerosis
My life with MS is now much more difficult when the temperature are either below 10C or above 25C. Outside that range and my physical symptoms become more exaggerated and mentally I feel wretched. Between 10 and 25 C I call my happy range. While the temperature is within the happy range then my life runs as normal as it can get. So the ability to regulate my body temperature is another hidden disability. You have probably heard of Uhthoff’s phenomenon, that is one of my numerous MS problems.
Temperature regulation
MS damages the myelin sheath, the protective covering of nerve fibres and these are called lesions. This damage can disrupt the transmission of nerve signals, including those related to temperature regulation.
Lesions in the brain, particularly those affecting the hypothalamus, which plays a key role in temperature regulation, can impair the body’s ability to maintain a stable temperature.
My autonomic nervous system, responsible for involuntary functions like sweating and shivering is also affected by MS, leading to further difficulties in regulating body temperature. I don’t sweat when I get hot, my face turns red and my forehead feels hot to the touch.
The only piece of good news is the problems caused by overheating do go away once the temperature returns to my happy range. Sadly there is no magic pill that can fix the problem.
During the summer
When the temperature is above my happy range then my symptoms get significantly worse because it can slow down or block nerve signals. Problems include increased fatigue, muscle weakness, and difficulty concentrating. Getting too hot is something that is at the forefront of my mind during the summer It affects when and where I go on holiday. When I do get too hot I am an expert at putting off jobs until tomorrow. It does affect me mentally even though I know full well the effects are temporary.
A really good way to cool my body down and restore normality is to take a long cold shower. Sometimes I get so hot the only solution is to go to bed and sleep for as long as necessary. When I wake up I occasionally feel as if I have got a colossal hangover. Life can be so cruel.
There are various solutions I have not yet tried. Wearing a cold wet T shirt is on my to-do list. We are thinking of putting air conditioning in the bedroom but that will have to wait until next year.
In the winter
Cold temperatures can also exacerbate my MS symptoms. Cold affects the speed of nerve signals, again, causing muscle stiffness, pain, and other issues. The biggest problem for me is not being able to bend my left leg at the knee when I sit down or fall over onto the floor. My leg is like a broom-stick, the knee is locked solid until I put weight through it when I stand up. Warming the knee by sitting next to a warm radiator is another solution. Also my feet are always cold until I get into bed and turn on the electric blanket for about an hour.
Looking back
I enjoyed being outside in the sunshine pottering in the garden or just being lazy. Now I stay must inside looking at the jobs that need to be done in the garden but I can still do lazy. It was not until about 2015 that the dreaded Uhthoffs syndrome significantly affected my life and is it going to get worse?. I expect it will but it will be slow, all part of smouldering MS.
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Image Red Moon in Night Sky By Alfaria
July 2025
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