It’s getting hot in here….

Unfortunately, not in the way Nelly meant back in 2002.  I mean as in boiling, sweaty, red-faced hot.

Like lots of people with MS, the weather affects me in a major way.  Cold weather makes me stiffen up, but heat is the worst.  It even has a special name, Unthoff’s phenonemon, which good old Wikipedia describes as:

The worsening of neurologic symptoms in multiple sclerosis (MS) and other neurological, demyelinating conditions when the body gets overheated from hot weather,exercise, fever, or saunas and hot tubs.

Weather didn’t used to affect me.  In the past, I was a sun worshiper -the hotter the better.  Although I have had MS since I was 15 (or maybe 13, if taking symptoms pre-diagnosis into account), it was only a couple of years ago that I noticed that my exposure to the heat had unwanted side-effects.  At first, it just presented as over whelming tiredness; a feeling that I wasn’t quite present and everything was happening slower than it should.  With each subsequent year, however, it has manifested as my symptoms (which are almost always there) becoming 1000x worse.  

It goes something like this:  due to my MS, my nerves don’t work as they should; messages take longer to get from my brain to where they need to be because of the ‘scars’ along the myelin sheath, covering the nerve.  So, although my brain tells me to move my left leg, it doesn’t move as quickly or with the range of motion that I want it to, due to the damage. The theory is that an increase in body temperature slows or blocks nerve impulses.  People with MS already have slowed impulses, so any further interruption is going to show as symptoms being magnified.  

This week’s weather (apparently it was hotter than Saudi Arabia at one point?!), brought my MS symptoms to a peak:

  • A left leg that could not lift at all, when I was outside in the heat
  • ‘Cog fog’ – something that I only get occasionally – coming out in full force.  In my case, this meant word-finding difficulties and an unable-to-focus-fuzzy-brain feeling
  • Fatigue that left me feeling exhausted and disorientated, despite hours of sleep

So, what to do?  Luckily, getting out of the heat can help MSers get back to (their version of) normal.  So, I did that, plus lovely Hubs bought me both a handheld fan and a bottle of ‘Magicool’ (basically like cold air in a can).  I drank enough water to last me the whole year.  Cool showers.  Ice lollies.  And – my personal favourite – an ice-laden gin fizz cocktail (if I am going to have cog fog, I might as well have alcohol take some of the blame!)

Luckily for me, the drop in temperature today has really helped.  My family is going to Florida next year in March/April, so I am going to bear in mind everything that has helped and also research some other things I have heard about – cooling scarves and ice-vests.  I never thought that I would ever find myself saying that I would like the weather to remain cooler… I guess it is yet another change in me that MS has influenced.  But at least in Florida I will have been fore warned and fore armed, which will hopefully let me enjoy the holiday as best as I can.

Have I missed anything?  Does anyone have any ‘top tips’ for staying cool in the heat?


Jen 2

3 thoughts on “It’s getting hot in here….

  1. Mission Enduracool cooling scarves are the best. They stay soft and they really work. I’m going to ask about a pair of indoor sunglasses because bright light bothers me in the heat, even inside.


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