Question for those who suffer from the heat - My MSAA Community

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Question for those who suffer from the heat

greaterexp profile image
25 Replies

How long can you be exposed to heat before you feel its effects? At least for now, I can handle about 1/2 hour unless it's over 100 degrees.

Also, what is the major effect it has on you? Weakness? Muscle spasms?

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greaterexp profile image
greaterexp
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25 Replies
erash profile image
erash

greaterexp for me, the humidity seems to be a big factor in intolerance --> weakness, right leg/foot drop, balance problems mostly...longer duration --> cog fog. Duration varies somewhat.

Fortunately, I can recover relatively quickly with cooling and rest. My new Polar cooling vest increases my tolerance by @ 25%

But if I repetitively assault my body with heat exposure in 1 day it does seem to have a cumulative effect.

How about you?

greaterexp profile image
greaterexp in reply to erash

That's a great question, Liz. I'm still trying to figure it out. My symptoms have been a roller coaster after the relapse, and sometimes I'm not sure if there is a relationship to heat or activity. I do know I have a big increase in spasms with exposure to cold, but I've tried very hard to keep out of the heat as much as possible, heeding the many warnings I've read. I do feel there is a cumulative effect, as you mentioned. Such mysteries! I appreciate everyone sharing their experiences. It helps me look for ways to pinpoint the effects of things like heat.

pmbevac profile image
pmbevac

@greaterexp - It very much depends on the temp, mid-80's is ok for working outside for about an hour or so. Once the temp climbs to the mid 90's about 1/2 hour. 100 or better I'm toast. Drinking a lot of ice water and the cooling towel the good folks at Shared Solutions provided helps a lot. Mostly I feel increase fatigue and the main symptom of my right leg not working properly get exacerbated - hard to lift so I catch my toe on the ground & stumble a lot more and at it's worst I can barely lift it to climb stairs. Thankfully we are in Montana and there is very little humidity - a lot more comfortable than say Florida...

Morllyn profile image
Morllyn

greaterexp Sometimes a few hours, sometimes a few minutes. It depends on temperature, humidity and how rotten my MS wants to be. Some days I feel OK outside and others it makes me feel like there are lead boots on my feet and it is hard to keep standing.

Oh yea, and the heat can cause my eyes to be blurry.

kdali profile image
kdali

That depends on how rested I am to begin with, but I'd say after 30min everything goes downhill. I can't think, I stop talking or moving if possible, my vision blurs and left leg paresthesia gets worse.

I pushed it once on a jog when it was too hot because I thought my ice vest made me invincible 😂 My thumbs turned silver, the concrete liquid and Lhermitte's came rushing back for the first time in months. I learned my lesson!

I have much more time in dry heat than humidity.

ssdw1958 profile image
ssdw1958

Since I am home by my self during the day I do try to have lunch some times out side right by the door. Maybe a half an hour. Once the sun moves and it's on me I know it's time to go in. It sounds like I'm Count Dracula but I am not.

What does happen I do feel weak and I usually get an ice pack and put it on my knees to cool down I do that there because that's were I feel pain the most.

When I didn't have MS I would be at the beach a lot those days are gone :(

greaterexp profile image
greaterexp

It sounds like humidity plays a much bigger role than is usually mentioned in MS literature. My part of Oregon is much drier than my native Illinois, but a little sure goes a long way!

jimeka profile image
jimeka

greaterexp well, here in sunny uk, lol, I am a sun worshipper, but since the ms got worse I cannot handle the heat. Even cooking, taking a hot shower, it seems that anything that makes your body hot sets the ms off. It makes me feel weak, lethargic, limbs are heavy and harder to move. I have tried wearing a hat, but it irritates the head. So I guess you could say that I give in and I stay inside where it is cooler. I wonder why, and what heat does physiologically to make the ms flare up. Good post Erin, blessings Jimeka 🌈 🦋 🤗

erash profile image
erash in reply to jimeka

jimeka ive recently noticed that cooking, the heat from the stove gets me too 🙁

Amore55 profile image
Amore55

greaterexp this summer has been exceptionally hot here in Salt Lake. We have had so many days when it has been 105! It stays mostly around 100. And our humidity is about 10 percent, so it feels like a dry oven. I can only take the full daytime heat for about ten minutes. I get really dizzy, I stumble, and like others have said, my eyes get blurry. But I am dealing with optic neuritis right now, so my eyes are crazy anyway 🤣. Yes, heat is really a problem for most of us. I hope everyone has a cooling vest, it really helps. I will be praying that we all get relief and can be comfortable until Autumn! Great post. Love, Kelly

goatgal profile image
goatgal

greaterexp Direct sunlight, 85 or higher, 10 minutes max, often less. Shade, 80s, can work (mow, other heavier tasks) in the garden for an hour or longer. I try to get out when it's light but before the sun comes over the mountain ridges. When temps are in the 70-80 range, I do my usual 2 mile walk in and out of shade/up and down hill from 8-9 but run out of steam as soon as the morning air begins to warm. I can't do the walk if I start after 8:30. Shade, 90s, 30-60 minutes, light outside tasks (watering, sweeping). Shade, 100s, 10 minutes max. If for any reason I get too warm, my legs feel heavy (weights on my feet, feel like I am walking through molasses), vision blurs, eyes begin to ache, and a headache begins. If, for any reason, I overdo it, my face reddens, I may see spots before my eyes or feel dizzy. If I get overheated and fatigued, I am wiped out for the next day. Some of this may be age related as I am 77. Mornings are good. Afternoons, forget it.

Eleyne92 profile image
Eleyne92

The time it takes for heat to get to me varies. If I'm fatigued, it becomes obvious faster. Sometimes I'm aware that I've gotten too warm, but other times I only realize it when trying to make the transfer to the toilet. Then spasticity kicks in and I can't move my feet. Cog fog also becomes another issue.

Usually, an hour or so of cooling and rest sets me to rights. I hhave a low tolerance for heat so even an 80°F day could bring on heat issues. Unfortunately, sometimes even coffee will push me over that fine line, though. 😮😕😨

Juleigh21 profile image
Juleigh21

Good question! When I'm overheated I feel weak, fatigued, my vision blurs, and my body becomes very stiff and rigid.

I was walking the dog 4 evenings ago when I knew I was in trouble. It was extremely humid. I didn't think I was going to make it home and I'd have to introduce myself to one of my new neighbors and send them for my husband. Haven't walked since. That was scary!

greaterexp profile image
greaterexp in reply to Juleigh21

Juleigh21 , that is scary. I've been taking my cane whenever I have to walk far or walk much in the heat because I never know when spasms or weakness will hit, even on my best days. I feel a little silly mostly carrying it, but I'm sure glad I have it when I need it.

I hope you don't have to give up walking outside much, and hope you have great neighbors who will look out for you.

Juleigh21 profile image
Juleigh21 in reply to greaterexp

Use that cane greaterexp b/c it sure beats falling!!

When it's cooler, I'll resume walking. I enjoy it and I've met some interesting new people😊.

melack01 profile image
melack01

greaterexp I haven't figured out what temperature range yet. Last year it was in the 80's with just 15 minutes of more. This year it seems to take more time. It affects my balance, cognitive functions, causes my right foot to drag. I also carry a cane when walking. When my foot starts to drag, it helps for awhile. jimeka I also have problems sometime when cooking. It's hard for me to figure out what to do next and how to do it. When my husband hears cursing from the kitchen, he comes in to hug me and offers to help. Oh my, how his hugs make everything better.

rjoneslaw profile image
rjoneslaw

@greaterexp

I start to overheat and then I start to feel dizzy and close to passing out

BigMar7 profile image
BigMar7

I am a former sun worshipper who can't take direct sunlight going from the car to a store. I sat in the shade for an hour for the 4th of July parade but was very dizzy for the rest of the day. I hibernate in the summer and do upstairs chores in the am.

Weather temperature-I live in hot SW Arizona-I know most of you won't believe this but wearing a hat (as much of the time as you can-I have found that even short spurts of time without a hat can give me MS symptoms) will help and my Neuro told me that when I salt my food, salt it one more time.

Body heat from work- I was a dancer and when I would work out hard and get too warm, my vision would get dark, so anything that causes your body temp to go up can cause MS symptoms. Our MS bodies have the same problems as any other electrical wiring symptoms that gets over heated

sallyscharff profile image
sallyscharff

Hi, I get blurred vision and weakness with the heat. I live in San Antonio and it's 100 degrees and humid so I just can't be outside.

Pbargal profile image
Pbargal

I like the heat as long as it's not humid. That takes a toll. The cold is what kills me. It makes me hurt all over. I keep a blanket close by even in the summer, just in case the air conditioner makes me to cold. I even keep a light jacket in the car because restaurants are to cold sometimes. Then when I walk outside it's like heaven. My family will just shake their heads at me.

I know I'm an odd duck, but I guess it's a good thing since I live in west Texas. 😊 I am also a teacher who has recess duties. I had my neurologist right me a note so I wouldn't have to do outside duty when it was cold. Anything below around 65 with a wind or 60 without and I can't be out very long without starting to hurt, then the fatigue sets in. I guess MS has its perks no lunch duty for about 4 months out of the year.

greaterexp profile image
greaterexp in reply to Pbargal

So far, I've had more issues with the cold, too. I spent a lot of time during the winter with hot packs or a heating pad. It sure is an odd disease.

AngieRowe profile image
AngieRowe

Minutes or seconds, start to get weak, breathing problems, thinking impaired

MSWarrior_2016 profile image
MSWarrior_2016

I can last about 30 min depending on how hot it is. I get very very very weak.

jackiesj profile image
jackiesj

1st for all, did you know that children go down twice as fast as adults...so be careful in this heat...in the west, no humidity usually but...completely washes me out and so weak im on the couch.total body...

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