We are in the midst of a heat wave where I live, and others who participate in this forum might be affected by the same heat wave. We have had temperatures over 100F for several days now, and it will continue for at least a couple more days. I am trying to use all of the strategies I can imagine to deal with the heat, but I am wondering how others deal with it. I am finding it the most difficult so far this year. I am drinking cool water, sitting against ice packs, and of course keeping up with my medications, but it is still very hard. It's definitely making my symptoms worse. What do others do to deal with the heat?

Thanks,
Erin

run my power bill sky high. just got out of hosp.

stay cool
mike

During the summer, I keep cool even while inside. Like Mike said, AC runs a lot, especially if I'm moving around inside. I don't want any peaks and valleys of hot/cool because that means MG will have those too.

Fans are useful, especially the handheld type (while going out), but they don't cool the body down enough after getting heated up. The core muscles are the ones that truly need cooling quickly. Cold showers are nice. I've put my head in the freezer a time or two.

There are cooling vests, but they can be heavy and only last for 2 - 3 hours. Travelon has a great handheld fan. There are cooling ties that one can drape around the neck (cools after putting them in water).

Amazon.com: Travelon 3 - Speed Personal Folding Fan (2): Home & Kitchen

For those without AC, there are now stand alone AC units (not window units). Compare the costs with a hospital stay!

For me, just taking the garbage out is too much. I need to do the serious cool down right afterward. I also try to go out early or late when the air is not as hot. I've gone so far as to put "Boo-Boo buddies" in my bra (soft cooling packs made for kids)! They help for a little while.

Amazon.com: Fish Boo Boo Buddy(R) Cold Pack: Toys & Games

Don't forget that the worse MG is, the longer it takes to recover. And the effects are cumulative over time. Sudden shortness of breath episodes are a huge warning that the core muscles are far too weak. Try gripping something or holding the arms out to test how weak the muscles truly are. We can become weak so slowly that we don't realize the severity of that.

When in doubt, call your neuro. Or dial 911.

How are you handling the heat, Erin?! You take the bus, right? I don't think I could do that!

Take it easy out there!

Not too close of a hug though . . . too hot!
Annie

Thanks, pingpongman and AnnieB3. I appreciate your answers so much.

As for me, I am using all the ideas I have. I bought a neck wrap with a frozen insert this week. It was about $10. I tried it yesterday. I think it helped somewhat, but it only lasted about 1 1/2 hours. I've thought about getting one of the vests, but they are quite expensive and, as you say, i think they could be heavy and they would not last that long.

When I'm at home, I do run the air conditioner, but I live in a small apartment upstairs and only have one tiny window air conditioner. It does not sufficiently cool the apartment when the weather is this hot. It would be better to have a second air conditioner, and maybe that will be possible one day. I don't know. Meanwhile, I use big ice packs (commonly used for physical therapy) to help. I sit against them or use them over my abdomen. I eat popsicles. Sometimes I wet my hair. I did take showers in the past, but I can't take showers now because I have a permacath for plasmapheresis treatments. I eat cold food, rather than anything warm. That seems to help a bit. Yes, going outside is a real problem, including taking the bus. I'm not up to walking between the bus and my destination, or waiting for a long time at the bus stop in the heat. I try to find a ride if I need to go somewhere, but it is not easy. This afternoon, for instance, I have plasmapheresis at the hospital, so I will catch the bus soon, while it is cooler, and just hang out at the hospital until it is time for my treatment. On the plus side, they have very good air conditioning! So that is a bonus. But it makes for a very long day. Thankfully I do have a ride home this time, which is helpful because by then it will probably be over 100F again. I'll be so glad when this heat wave passes!

Yes, careful hug thoughts to everyone (so that we all stay cool).

Love,
Erin

I'm 83 y/o and had severe shingles about two years ago (still have residual nerve pain) and was diagnosed with MG about three years ago. I live in north central Arizona and our recent weather has beaten all past records.

What I'm finding is that I can only spend a very brief time outside before I become very fatigued - especially my arms - and my skin starts to sting like little pin pricks, mostly in my back area.

I do find relief when I come indoors to cooled air, plus sometimes I'll take an Advil or two - for the arm pain. Just some things I've noticed.

Yes, I bet you have to be very careful there in the summer heat, finuch! I am so sorry you recently had shingles on top of everything else. I know they are very painful.

I have had some of that pin-prick sensation from the heat, also, and I though it was just me. It goes away if I can get somewhere cool enough, so I know it is related to the heat. But the worst thing is the muscle fatigue and other symptoms, so I try to stay indoors where it is cool when we are having hot weather. There just isn't much of a way around it, it seems!

Sending lots of good wishes your way,
Erin