Hot then cold then hot again... Anyone e... - My MSAA Community

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Hot then cold then hot again... Anyone else with broken themostat

ddeadred profile image
14 Replies

I'm wondering about disrupted pathway from the hypothalamus and the brain... Since it controls many of the things that bother me...

I always tell people that my internal thermostat needs to be replaced so that my body will regulate my body temperature properly (mind you ladies, I'm a couple years past menopause so it's not that... of course power surges probably keep me motoring along--LOL). The hypothalamus is not white matter so it does not get the lesions. For me, I think the pathways have been damaged.

Anyone else with a poorly performing thermostat?

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ddeadred profile image
ddeadred
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14 Replies
Midgey_Midge06 profile image
Midgey_Midge06

Totally! and living in Texas does not help at all. In the winter here i do ok but right now the weather is doing crazy things so my body is running amok as well. I go from having the A/C on to having the heat on a few times a day

ddeadred profile image
ddeadred in reply to Midgey_Midge06

I've learned after 30 years+ of the MonSter to just set my thermostat at 68 degrees and grab a blanker then throw it off then put it on and off them on... LOL

Iona60 profile image
Iona60 in reply to ddeadred

Ours is set at 69 and I do the same thing. I've read that most people with MS have trouble regulating their temperature.

Morllyn profile image
Morllyn

ddeadred I have said that my internal thermostat has been broken for years. When I work in my yard and get hot, just coming in to the air conditioned house, and drinking something cold, does not cool me down, I have to get in a cool shower for a few minutes. When I get cold no amount of warm blankets help, I have to get in a warm shower. Thankfully this only happens once in a while but it is annoying.

ddeadred profile image
ddeadred in reply to Morllyn

At night even if I'm hot, I pile on the blankets for the weight... Only thing that calms my legz from spasms... It's been a long 30+ years of dealing with the MonSter...

Morllyn profile image
Morllyn in reply to ddeadred

This July will make it 40 years for me. I am still alive and kicking. Well, some days I can kick, others, not so much. Ha ha.

CalfeeChick profile image
CalfeeChickCommunityAmbassador

oh yeah, hope I can say this here, this is worse than menopause. I'm very heat sensitive. Because right now, my numbness/tingling have worsened for about 2 1/2 days, I am in bed with numb legs & feet, they also feel like they are in blocks of ice. So I have the electric blanket on, socks and leg warmers, trying to stay cool on top, warm on my legs.

ddeadred profile image
ddeadred

Calfee Chick, long ago and far away (30 years in fact), sleeping under an electric blanket caused first exacerbation. Too much heat and too bitter cold FLARE absolutely ALL of my worst symptoms. Personally, I'd check that with my neurologist on that one, and don't run to or call my neuro much at all ...

4fishylady profile image
4fishylady

@ddreaded Oh my! For me, thermostat issues, "hot flashes" began at age of 40, normal? Yes/no? Was put on hormone pills for many years, which calmed them, until withdrawn for issues related to breast CA and heart health. Then, just tolerated them.

30 years later, MS diagnosis and put on Cymbalta first day. "Flashes" changed to "flushes", which seem to be more on the surface of the skin, rather than so deeply imbedded inside the body. (Currently on 13th day of cutting off that pill, with no knowledgeable withdrawal symptom. I did wean down, little by little, over the past year, to for several months only 30 mg. per day.) I am today on 8th day of dbl strength prednisone therapy for my first known "MS flare" (involving something of a brain squeeze, with lots more mental fog.) My body may still be confused about who, and what is in control of it, but still having some "flushes", with a lot of heat involved. I am normally "cold blooded" but right now, am pretty sensitive to any warmth, so I go around with less clothing than normal for me. I have neuropathy in feet and legs, with burning feet issues, especially when on them too long. Sometimes have to stick them out from bedcovers to get to sleep. Wear sandals most of the time in house.

In NC, we are having a severe cold spell, unusual for March, and when I have to step outside, it feels kind of good! Got extremely tired yesterday, pushing much harder to get some things done, than I should have. I went to a church service, and met with some people in a very hot room. My face was burning hot, thought I would melt and did have trouble walking afterwards. I survived! Glad I hadn't driven. Might not have made it home! It's morning now, and my face feels like I should take my temp. Not really sick, just face too warm. Must be the steroid. Thank you Lord, for a another day!

Welcome to the club. Best wishes on your continuing journey!

ddeadred profile image
ddeadred in reply to 4fishylady

Darling FishLady, you just wrote my life story!!! Good luck on prednisone--I avoid it like the plague as it makes me want to KILL... I'm ALSO A 30 YR. VETERAN of the MonSter, take Cymbalta et al (Baclofen Gabapen Copaxone Oxybutinin for MonSter related) Walking Drug Store I tell you... Put the sweater on, take the sweater off, walk out to mailbox with no coat with snow falling...

Then there is the foggie mush brain... Still kicking butt nearly everyday!!!

goatgal profile image
goatgal

ddeadred Maybe we need engineering assistance? Like you I have a broken thermostat and an undependable gyroscope. You suppose some rewiring would help?

ddeadred profile image
ddeadred

Professor Gadget??? LOL... xo Cj

ssdw1958 profile image
ssdw1958

My thermostat is so messed up this heat has got to go they say here in Massachusetts Friday we’re going to have thunderstorms and our Canadian friends are going to be bringing down some cooler weather. I do love it when they send us the cold weather in the summertime not in the winter. I figured out when I first got this MS the perfect temperature for me is 58°F we are so off that number at least 40° I do know what you’re talking about I am passed menopause. I know the whole country is so HOT and some places it’s dangerously off I hope everybody has access to an air conditioner. I’ll say my prayer for everybody even if you don’t have MS. We all need this weather to break. just six months ago I was complaining about the freezing cold. You know that saying you better watch what you wish for.

Good Luck to everybody.

🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼

scoutman profile image
scoutman

most definitely. And all of a sudden at 58, I sweat. Never did. and now I do.

How do you do in the heat? do you stay in?

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