Some Things I Wish People Knew About MS And Temperature
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The time of year that so many with Multiple Sclerosis fear is nearly upon us.  That’s right, summer is coming!  Whenever the temps start to climb, those battling MS have begun to get their cooling gear ready, started to prepare for their hibernation, and have been reminding their friends and family that the heat of summer can be extremely awful for us.  I’ve talked before about the effects of sudden changes in temperature on us, but I wanted to write something, like my fatigue article, that I could use to quickly and easily explain the problems we can encounter when the temperatures get too hot (or cold).  So here we go!

Temperature and MS symptoms

  • Our problems with warm temperatures have a lot to do with what our disease does to us.  MS makes our immune system attack the lining around our nerves (think of this lining as insulation).  This insulation is called myelin and it gets damaged or destroyed because our immune system thinks it’s an intruder.  The same way it would try to fight a virus, it fights our nervous system (ugh, the nerve!  Sorry, I had to).  My favorite way of looking at this is comparing it to a frayed wire on phone charger.  If the wire is frayed, your phone and the charging cord will often need to be in a particular position for your phone to charge.  That’s how our bodies become with MS.  The longer we’ve had MS and the more active it is, the more frayed sections we have.  Now, when it starts to get warm, no matter what position our “wires” are in, we begin to have problems.  That’s because those damaged wires (our nerves) have trouble conducting those electrical signals when the temperature goes up.  If it gets too warm, and our nerves lack that insulation (the myelin), the signals will be even slower than normal or may not make it where they are going at all.  For example, my brain could send a signal to lift my foot, but it doesn’t get there in time (or at all), but the rest of the signals my brain sent out to make me walk do make it, so then I end up falling.  That communication between my brain and the rest of my body along those electrical wire-like nerves is what’s a mess here.
  • When temps go up, we may have problems, but typically, if we cool down, we will be ok.  The signals being sent along those damaged nerves have a much better chance of making it where they are supposed to go if the temperature is cool.  Sorry to go back to that analogy, but, think of cooling down as a way of getting that charging phone and frayed cord back in the right position.
  • The temporary worsening of symptoms we experience isn’t a new worsening of our disease; our disease didn’t suddenly progress in front of you.  The problems we are having are because of damage that’s already been done.  We always have that damage and potential for those problems, but because myelin is like an insulation, of course temperatures are going to highlight the effects of that damage.
  • It doesn’t take a big swing in temperature to cause a problem.  If the room goes up by even half a degree, it can have an effect on us.  Our nerves, like a house without insulation, can feel the changes outside much more easily than if we were fully insulated.
  • We can have many different problems when it gets warm.  People are sometimes shocked by the many types of symptoms we have.  It’s important to remember that we are talking about the brain and nervous system.  It’s vast, complex, and controls everything in our bodies, so of course damage to it can cause a lot of strange problems.  From fatigue, pain, trouble moving our limbs, seeing (if I get too hot, my vision goes blurry), speaking (I also slur my words when I get warm), cognition (I forget everything when I’m too hot), weird sensations (sometimes I feel like my legs are soaking wet when they aren’t), mood swings, and more.  Our symptoms are as vast and complex as the brain and nervous system.  They may or may not be apparent everyday, but will definitely show up if I get too warm.
  • I’ve mentioned a lot about warmer temperatures, for some of us with MS, you can take everything said here and apply it to cold temperatures as well!
  • These problems we have with temperatures can be very isolating.  I’m at a point where I normally need to be in a nice air conditioned room when it’s hot, or even slightly warm, out. That can be rough when it’s summertime and everyone wants to hit the beach or BBQ outdoors.  If we aren’t around as much during warm weather, it’s not because of you, it’s because of our disease.
  • Even though we know warm (or cold) temperatures can be a problem, many times we might still try to grit it out and deal with them so we can feel included.  That can end up being rough on us.  I’ve been at this a bit and sometimes want to just push through and maybe not see for a bit in order to hang out with friends.  I know I can get cool and recover.  Sometimes though, I’ll overdo that and need to be carried out.
  • Problems with warm temperatures don’t necessarily mean that the winter is any easier.  I find that the winter time can sometimes be worse, because many places jack up the heat.  At least in the summer, if I stay indoors, most places are trying to keep it cool.
  • We work hard to stay the right temperature.  Many of us have cooling gear, from vests to headbands.  I’ll actually put ice packs in my pockets when I go out to help keep cool.
  • As a final example to help demonstrate what warm temps can do to us, I’ll mention that many years back, if a person was suspected of having MS, doctors would use the “hot bath” test to diagnose them. Basically, they’d have a person sit in a hot tub of water and if they started to experience neurological problems, then they’d accept that as evidence that they had Multiple Sclerosis (this makes an MRI seem nice in comparison!).

It’s getting warmer

I’m sure there is more to share on this topic, but I don’t want overwhelm anyone!  I wanted something bulleted and short that people without MS could take a look at and hopefully get a better idea of what temperature can do to us.  Feel free to share and raise awareness, particularly as it’s now getting warm in many parts of the world.  As always, I’d love to hear some comments about your experience with temps (warm or cold) and also your tips on fighting the issues we have with them!  As always, thanks so much for reading!
Devin

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