Loss of heat tolerance...

[Clearwater AL]

First, I’m from Clearwater Florida. Just a few years ago if a day was 85 or 95 degrees didn’t make a lot of difference to me.

A few days ago I went to a “outdoor get together” where I had to walk with my walker a considerable distance from where I parked. The temperature was 96 degrees and the humidity was high. I was able to sit under an umbrella. I hung in for almost an hour and a half. I was feeling unusually tired, a different tired, had to leave early. Getting back to the car was a struggle. Understandably now, in some aspects, I have not recovered. That venture may have been a mistake.

ALS sites really don’t have a lot on this topic or I scrolled past them.

Do other members have a loss of heat tolerance like this since diagnosis?

 

[GregK]

I have the opposite issue: I'm only not cold when the temp passes 80.

 

[Nikki J]

It seems to me we had a thread on this a year or two ago. If I remember correctly half were like you. Half like Greg ( and me). And cold makes me stiff and miserable. Maybe you and I should trade houses!

 

[Clearwater AL]

Hey Nikki, cold makes me stiff too... I can't bundle up enough. But this was/is a new experience for me in these hot humid days.

 

[KarenNWendyn]

I've definitely noted less heat tolerance and needing to drink much more water just to avoid dehydration. Minor exertion in warm weather makes me sweat a lot more these days. My guess is it has to do with being in a catabolic state due to muscle breakdown. I think for PALS noting cold intolerance, it also relates to having less muscle mass.
Karen

 

[JimInVA]

Our house is a constant struggle to keep each of us comfortable. I keep the thermostat set at 70 degrees. Even at that temperature, I often have sweat across my forehead. When we don't anticipate visitors, I quickly strip to skivvies and a t-shirt to keep reasonably comfortable (or somewhat bearable). Darcey is always cold. I bundle her in a heavy blanket... and sometimes two. In the winter, we use an electric blanket. While on vacation, with the temperature on the balcony at 95+, she said... "Nice... I don't need a blanket and I'm almost warm!" Of course, I walked out and within 30 seconds had sweat rolling down my face. Oh the joys of one with ALS and one with MANopause...

Jim

 

[DaChief]

I am in the "Can't take the heat" camp. I don't last long outside in the heat now and that has changed in the last year or so. And I grew up in the Florida sun.

 

[KimT]

Al, I find that organic coconut water works for me. I can't stand the stuff in the can but Harmless Harvest 16 ounce and I get both energy and heat tolerance.

Since I gained weight, I am warmer. Before ALS, I couldn't stand anything below 70 degrees outside but I could tolerate long runs and walks in very hot weather.

Since I no longer walk far, I seem to tolerate the heat well as long as I'm super hydrated.

I miss swimming in the Gulf. The Atlantic is too rough (and cold) for me now.

I still use the heating pad on low at night and on my lift chair. I keep the A/C at 76 and turn it down to 75 or 74 at night.

I usually wear tank tops and shorts or sweats around the house....for that matter everywhere.

 

[gooseberry]

Steve had a lot of difficulty breathing in hot or humid weather. Our house was always at 65 for a/c. He would wear shorts and shirt and say he was comfortable. He would be cold to the touch....me on the other hand......I was hot so I finally got good sleep in the summer!

 

[sunandsea]

I was actually about to post a question on this topic. My PALS always seems warm and sweaty and we keep our house quite cool with the ac. Usually I'm wearing sweaters and he's in shorts and short sleeves and still hot. I often check his temp to be sure he's not running a fever and he isn't - just very warm. He could drink and drink and we do give him plenty to stay hydrated. I was wondering if this was normal. Maybe for some it is?

 

[GregK]

I think trying to define "normal" For this disease is the fast track to madness.

 

[affected]

Chris experienced difficulties with both heat and cold.

He had always amazed me because he could work all day on a hot humid day outside and he truly didn't sweat. Until ALS ... he would sweat and so much that he had terrible fungal issues.

He also however, even during warm weather could become quite suddenly cold and even in summer would go to bed with socks on.

It definitely messes with the bodies ability to control temperature!

 

[WendyWooG]

I seem to have lost all ability to control my body temperature, it can drive my husband and daughter nuts at times. I also find that I can be really cold but still find my feet are burning hot different bits of me react differently to the heat which is very odd.

My remote control fan and ac are my best friends and I have stocked up on lots of baby blankets so we can layer up in different areas, it looks odd but works.

Wendy

 

[KimT]

Wendy, my feet feel like they are on fire. It feels like neuropathy-type pain. I try various slippers, sneakers, socks, walking barefoot. Barefoot seems the best.