Hot Weather
 

Do any of you have problems with really hot weather? I get really tired after very little activity (even though I am mostly in air conditioning). Just wondering.

Hey, Nikos. Avoid heat/hot weather like the plague! That can make MG exponentially worse.

If you do become overheated, cool down right away. Put a fan in front of you, take a cold shower, whatever you need to do to cool the entire body down.

What is really bad about being too hot is that it's hard to tell how much weaker you've become. People tend to have a MG crisis in the summer months. So try to cool down, and nap, if you get too hot.

Annie

I'm also new here and to having MG. In just the last few days I have had several encounters were heat quickly brought on weakness. Fortunately recovery was not terribly long either once I got cooled off.

I wonder, have others found a temperature at which they begin to notice effects? I'm trying to pay attention. I don't quite have a number but it seems to start well before "hot".

In in central Florida we have plenty of hot days, low 90s with heat index numbers in the low 100s. One thing I'm working on now is how to keep the parked car cooler.

Maybe this is old news but for me it helps to see measured data. This is all so new I keep trying to convince myself it must be partly imagination. I guess not.

I found this in The Lancet, Temperature and Weather Correlates of Myasthenic Fatigue. I was able to get the full article from the college library. Here's a few tidbits:

• A 5 deg C increase in temp caused RNS testing to go from normal results to a 44% drop
• "Changes by only 2 degrees C influence neuromuscular transmission to a significant extent"

I'm really astounded at the impact of temperature. In fact I'm learning that being just a little colder than what I usually consider comfortable is a huge help.

This past week we had to take a long day trip into New York City.
Here in the northeast, the summer has been very hot, but even worse, very very humid.

This trip involved car ride, bus ride, train ride, cabs, walking, waiting inside a building with room ac'd but not hallways/bathrooms, restaurant, various train stations.

The various parts of the trip were well air-conditioned, air-conditioned but not controlling humidity, poorly ac'd, ac'd but outside door opening frequently, no direct ac so much hotter and more humid than other parts of the building, and just plain outside air of about 80 F with 95% humidity.

It was a long (10 hour) hard day. But, changing conditions so many times as we traveled and did what we had to, I was amazed to notice the very quick changes in how I felt related to how well the climate control was. It wasn't simply "cooler is better". Cooler and dryer was better, massively better. Any change to warmer or more humid was immediately worse. Dry air conditioning was massively better than humid air conditioning, even if the temperatures were the same.

Normally, when we have to do something that's "hard", when I am done, I am done, period, rest of the day is wiped out. But, having walked the city streets a bit, and being ready to drop, shortly after entering a well-airconditioned room and getting to sit a few minutes, I felt so much better and ready to go again (which I didn't. not foolish.) Out into the warmer, humid hallway and to a small, airless, hot bathroom, felt awful, short of breath, worn out. Back into the cooler room, immediately better.

The train home was ac'd and very low humidity, whereas the one down had been ac'd to the same temperature, but more humid. Noticeable difference.

So, all this rambling is to say, that it may not be just the temperature that you need to watch out for. Not all air conditioning is the same, if it doesn't cut the humidity way down as well, that could be why even in ac you still tire easily.

and my family thinks I'm nuts when I adjust the ac/heat by just "one more degree".....

I have found myself more and more intolerant of heat. Even in the house with AC I sweat profusely when I do housework. Even stepping out to get the mail, I sometimes have to shower because I sweat so profusely.

Also, I suffer with barometric pressure illness. When the pressure drops (incoming rain front) I hurt more, both neuro and muscular.