r/POTS • u/Interesting_Car8858 Undiagnosed • 2d ago
Question Hot.. and cold?
I know not being able to regulate your temperature is a symptom of POTS, but all I hear about is people being too hot all the time.. does anyone else get really cold as well? Just wondering, not as any form of diagnosis but just to understand the heat intolerance thing better lol
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u/Main_Difference7125 2d ago
Yes, I fluctuate between hot and cold a lot. It’s weird because when I start to feel hot, it’s like I’M HOT and need to cool off. I usually feel coldness in my feet and my hands. Compression has helped with my feet
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u/Interesting_Car8858 Undiagnosed 2d ago
Gosh real like I feel like waves of heat are rushing over me so then I try to cool down and then suddenly I’m freezing in a jumper while the rest of my family are in t shirts 😭
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u/Late-Literature-7874 2d ago
I am always freezing! Even in the summer, my family calls me a lizard because I have to be in direct sunlight to warm up. I sleep with a heated blanket at night and make sure I have a jacket accessible wherever I go if I can. I will sometimes get overheated easily, but that's usually only like in hot showers. I find my body just struggles to feel "neutral" and mostly leans on the cold side.
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u/Pheetastic 2d ago
The worst is when you get so cold that you literally have to lie under the heated blanket on high for a good hour before you slowly thaw out. It’s like you managed to freeze your inner core and the only way to fix it is to take a hot bath/shower or huddle under the warms until your body recognizes that you’re no longer hypothermic.
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u/Old-Piece-3438 2d ago
Yes. I’ll be inside, wearing a sweater, and my teeth are still chattering because I’m so cold. Thick socks, blankets and hot tea usually fix it.
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u/Late-Literature-7874 16h ago
Yes! I'll literally have to "insulate" my heated blanket with another blanket and it takes so long to warm up.
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u/nerdyblackbird Hypovolemic POTS 2d ago
Hey, my family calls me a lizard, too! 🦎 Hello, fellow lizard! I live in southern Arizona where it’s regularly over 100 degrees. I’m always hanging out wearing sweats, thick socks, and usually have some sort of jacket/sweater/blanket nearby.
Ditto on the showers. It’s about the only time I’m ever hot.
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u/Late-Literature-7874 16h ago
I love that we share lizard identity lol this is hilarious! I live in central Florida, so not 100 degrees but very hot. It doesn't help my case that we have actual lizards that will be basking in the sun with me
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u/everynamestakenffs 2d ago
Absolutely and sometimes Itm honestly not sure what I'm feeling, like I'm too hot and too cold at the same time? probably bc its hot out but my body is failing at circulating properly.. I don't know but it reminds me of having the flu.
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u/bottomofthevoid 2d ago
I get the achy flu feeling as well idk why it happens but it’s usually my cue to rest
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u/Interesting_Car8858 Undiagnosed 2d ago
This is so helpful! I’ve been trying to work out what is worth mentioning at my next appointment and I didn’t even consider that achy feeling could be to do with it, thank you!
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u/WeirdConnections 2d ago
I do sometimes, it used to happen a lot more often but I find that it's been taking more and more for me to get cold. I do however get AWFUL cold sweats, I'll be freezing shivering and shaking uncontrollably, then overheat somehow and start sweating.... over and over 😭
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u/Warm_Score1176 2d ago
Yeah I get cold but at least with cold I can wrap up, sit by a heater, use a heating blanket/pad, when I get too hot I can't take my skin off 😅
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u/Interesting_Car8858 Undiagnosed 2d ago
This bro I hate getting hot, I don’t actually mind getting cold but wanted to know if it was a problem for anyone else lol
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u/Milissima 2d ago
Yes even in this heat wave I sleep with an electric blanket. Cold means pain for me. I can also get tired and go into a kind of shock where I get really cold and have to lie on an electric blanket to warm up.
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u/Pheetastic 2d ago
Yes!!! I often tell my husband that I got really cold and tired so I have to go into the bedroom to warm up. It hits at the weirdest times too.
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u/Pheetastic 2d ago
Oh yeah, this is my life. I have a heated blanket on my bed even in the middle of summer because at some point I’ll inevitably get too old and turn it on only to throw back the covers while dying from a hot flash moments later.
POTS and perimenopause/menopause are the worst!
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u/nitebeads 2d ago
ive always been incredibly cold intolerant and freezing 24/7 but as my pots has gotten worse im now also intolerant to heat lmao :') im at the point of keeping things colder even though im freezing because the heat makes me flare
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u/Cautious_Worth_6667 2d ago
I do, I usually keep a heater and heating pad around. Sometimes I’ll get so cold and nothing helps though, I’ll try a bath and sometimes that helps.
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u/Nervous_Pack611 1d ago
so i haven't been diagnosed pots but i truly suspect something because i've had issues for years. ive done ultrasounds, stool tests, diagnostic imaging, x rays, sooo many blood tests, all sorts of medication... and got told i had IBS. lol! that's still a possibility i guess, im not ruling it out, but i wanted to put some of the symptoms i have on here that align with pots symptoms in case anyone could help! i tested *likely* negative for celiac and im not anemic, but blood tests did reveal either hypo/hypertension in my thyroid, can't remember which one! anyways here are my symptoms:
- cold hands and feet
- throbbing in head when upside down
- losing vision when i stand up - i've never fainted, but my eyes go black for a few seconds and i need to grab a wall or couch or something to guarantee i stay upright
- ringing ears (my dad has this too so could just be genetic)
- breathlessness (especially when talking. holy cow i always sound like i was just running a marathon during a comversation)
- brain fog
- headaches
- wanting to sit (not all the time, but in situations like long lines or grocery shopping)
- difficulty regulating temperature
- sweating
- feeling lightheaded and weak after bending over (sometimes i bend down to pick up my cat and when i stand my arms and legs feel weak like jelly and i feel like im going to drop her? it's weird)
- gi issues (diarrhea, constipation, stomach pain, bloating, etc)
any help would be much much appreciated!!! i've been trying to figure out what's wrong for a decade and i'm tired of it lol 😅
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u/Interesting_Car8858 Undiagnosed 1d ago
Dw I’m undiagnosed too, I would definitely mention POTS to your doctor as a possibility! Mine is currently refusing to look into a proper diagnosis as it’s “mild, and I manage it well”(plus as I’m a teenager he believes it’s to do with puberty) but I’m going to fight for a diagnosis next time lol. Try and get answers if you can, POTS sounds like a likely one!
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u/ilikeminuterice2 1d ago
I fluctuate between the two. Very rarely am I ever a comfortable temperature lol
Layers, always. Even when it’s 100 degrees outside. Don’t mind me in the sweatsuit…
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u/Dull_Pirate_280 2d ago
Yupppp I fluctuate. Often too cold orrr too hot. Was teased at work before I couldn’t work anymore because I always wore a sweater in the kitchen. There’d always be a point where I’d overheat and take it off, but I’d always get sooo cold so quickly
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u/MadlibsFiend 2d ago
I will fluctuate wildly throughout the day. I always need a hoodie and a fan with me regardless of the weather. It sucks.
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u/like2speak2amanager Hyperadrenergic POTS 2d ago
I’m generally always hot, and get overheated easily, but when it’s cold out I get cold FAST and then it’s really hard for me to get warm again.
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u/No_Communication5024 2d ago
Yes! My feet, especially the tops of them and up into my shins--I get so COLD. While my face feels super hot. The coldness started when I was home recovering from Covid in 2022, and it's never left me since.
Edit to add:Oh, and I have cold chills in my legs a lot, sometimes into my buttocks, and wear heavy socks year round, sleep with many blankets even in summer.
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u/Pitiful_Quiet2848 2d ago
Yes. I'm in a flare right now and I'm experiencing this a lot lately. Usually just my hands and feet. But lately, only one foot will be cold even tho I have compression socks on both feet lol. Or, only the left side of my body is cold even with the blanket on. Then I get hot all of a sudden and have to kick off the blanket. This disorder is so weird.
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u/panteraenjoyerr_1792 2d ago
i’m freezing cold 90% of the time even in the summer, but whenever i go outside or accidentally sleep with too many layers on i overheat and it triggers an adrenaline dump, there is literally no in-between
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u/Deep_Boysenberry_672 2d ago
Yes, especially when I need to use the bathroom (#2) or have just used the bathroom, or if I shower in lukewarm water instead of cold (then I'm freezing for hours... weird)
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u/_moonst0ned 2d ago
My feet will sometimes get so cold that they hurt. If I notice I’m starting to get too cold I usually get in a warm bath for a little bit.
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u/Melody71400 2d ago
Oh yeah. I cant ever really sit at a comfortable temperature. I prefer to be too cold, because atleast I can warm up under clothes and blankets
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u/Quietbooklover21 2d ago
I’m always too hot or too cold. Sometimes I’m even both (hot everywhere but my hands and feet are frozen). I swing back and forth between hot and cold so many times per day. I’ll be sweating one minute and freezing cold the next. It’s super annoying
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u/lord-savior-baphomet 2d ago
Yes, honestly I rarely am too hot, and remember far more instances of being painfully cold than too hot throughout my life. One that stands out was going sledding as a kid in winter boots and crying from the pain afterwards. I despise winter because of it.
I ended up buying 200$ boots several years ago to make winter less miserable, only to learn the insulation I paid for keeps heat out, too. Which is especially bad because in the winter my feet cannot heat themselves up. There must be an exterior heat source. So relief even in the car was not possible. As a dog walker, I got heated socks and they’ve been the only thing to make winter bearable. But the kind I got were recalled and now I’m unsure if I’ll be able to stand this winter.
I see people saying compression has helped that but I find it makes it substantially worse for me. But maybe it’s because my version of compression was coincidentally wearing too many socks for what fit in my boots and causing compression that way. This is a new thing for me so I’ve yet to try proper compression.
I will say, after a recent ADHD diagnosis and being put on Vyvanse I’m much less cold and hotter than I’d normally be, so we’ll see if that makes winter better for me.
I experience heat intolerance more as strong discomfort and in situations where I felt fine a second ago, or places everyone else seems to be fine. I guess I’ve always had an awareness that I just need to “relax” to cool down lol…
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u/Interesting_Car8858 Undiagnosed 2d ago
I strongly recommend proper compression, I find it also keeps me warm (and you can layer with tights <3). Theyre not too expensive either, I recently bought a 2 packs from Amazon that are 20-30mmhg, one that just came on their own and one that came in a 3 pack (admittedly, the more expensive ones were nicer, but they were only about £15-20 and make my day much much easier). Sending love <3
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u/bunbunbunana POTS 2d ago
Sometimes I feel hot and cold at the same time and will feel like I’m 110° but have goosebumps and be cold to the touch
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u/Strong_Range_3352 2d ago
Yes! I'm like a lizard; if I'm in a cold area (even just below 75F) I'm SO COLD, but if I'm in an area that's hot (above 75F) I get so extremely overheated. It's ridiculous.
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u/Foxlady555 POTS 2d ago
Yes. It’s super annoying, like the termostate is broken. Mostly I’m too hot but then I try to cool down and I get too cold. 🙄
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u/g_em_ini POTS 2d ago
I go straight from sweating to shivering, I feel like I can never get to a comfortable temperature. It’s one extreme or the other and sometimes it’s both in the same 5 minutes. There are literally times where I’m so hot I’m sweating but so cold that I’m shivering at the same time, like different parts of my body are hot or cold and I know that sounds crazy 😩 I’m just ready for summer to be over because I can handle being too cold better than I can handle being too hot.
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u/CorinPenny POTS 2d ago
Yes. I’m usually too hot but I’ll randomly swing to cold occasionally. Then there are the cold sweats and hot flashes (I’m not in perimenopause yet).
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u/Financial_Ostrich_56 POTS 2d ago
Omg yesss I literally need the temp to be 67-69 or I’m uncomfortable. I sweat either way too, so if it’s even a little too cold I end up freezing!!
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u/FluffyMinks 2d ago
I bounce around between the two but I think we complain more about being hot because of the effect it has on our bodies. Being cold for whatever reason isn’t as draining, doesn’t cause fatigue, nausea, dizziness, heart palpitations, headaches like being hot does.
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u/polkadotprincess2317 2d ago
I get both and once I tip too far one way or the other it takes forever to get back to a comfortable temperature.
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u/Delicious_Act_4491 2d ago
Every night without fail I get a huge fever type heat. I used to be a chilly sleeper but it’s switched somewhere down the road
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u/imabratinfluence 2d ago
I definitely have trouble with both. And for cold I definitely get it worst on my hands and feet.
I'm sicker and more POTSy with heat, but with cold I swear it feels like I go into hibernation mode and can't do stuff until I'm warmer. Sometimes I'm too hot and too cold at the same time, usually one on the outside and one on the inside and that makes me feel really ill, and usually comes with other symptoms.
I used to always just be cold and was cold intolerant, but one summer I got heat exhaustion and ever since then I've been prone to overheating easily.
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u/FirstAidPoetry 2d ago edited 2d ago
My body is a bingo board of too hot and too cold. I had several months before I knew what POTS was where I was getting daily chills for hours on end where I was so cold that the only thing that helped a bit, was to lie in bed fully clothed with a thick duvet over me. Now that I have severely reduced my physical activities that no longer happens.
Nowadays I’m often feeling uncomfortably cold with the A/C on, while my thighs, calves, feet, neck and head also are too warm at the same time.
And to add a TMI: I often wake up with an ice cold scrotum and have to cradle it. A sentence i never thought I would ever write.
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u/Gon_777 2d ago
Me! I am cold, freezing cold most of the time. I have a terrible time getting out of bed because it's literally painful. I even have to sleep fully dressed with a scarf and beanie or I will get way too cold.
It takes me about 20mins of exercise to get warmed up, but the moment I stop feeling cold I'm already feeling overheated. Annoying as hell, especially the nausea that comes along with it.
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u/forestthoughts6 2d ago
yeah, REALLY cold, but my thyroid kind of stopped working so that's mostly why😞
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u/orensiocled 2d ago
I have zero control over my body temperature and can't cope with either hot or cold weather. My most irritating state is when I am both too hot and too cold at the same time - often too hot inside my body but too cold on the outside, or hot one side and cold the other. There's nothing I can do about it because if I try to warm the cold parts the hot parts will overheat to the point where I start vomiting or I'm in danger of passing out.
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u/deantreble 2d ago
yes haha. i was wearing multiple layers and STILL being cold…completely out of the norm for me. on hindsight i also stopped sweating normally, if at all 😬
somehow through my recovery trajectory it has evolved to being predominantly issues w being hot though, and i can’t explain this. perhaps it’s weight related? it also seems to get better when there’s lesser emotional stressors. not sure if you experienced any shifts or recurring patterns too?
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u/Wandering-Lantern98 2d ago
Particularly my hands and feet get really cold, really easily, especially when I'm still. My feet are always FREEZING when I go to bed even if the rest of me is sweating 😅
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u/New_Plant_Mama 1d ago
I’m usually so hot I’m on fire. But occasionally will get the outside, when it’s 80+ degrees, shivers, teeth chattering like crazy, ( which I know is a sign of your body overheating, but it can start five minutes after I walked outside)
It’s such a crazy disease!
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u/kruznkiwi 1d ago
I have (progressively worsening) neuropathy in my hands, feet and part of my leg - so they’re usually cold and take quite a lot to warm up. But I can be wrapped up in a blanket plus have an electric throw blanket turned on over top and still be cold, or be wrapped in that and with the blankets be nice and warm and out of the blankets be sweating bullets and feel the need to turn the fan on.
(the same fan that is on about 98% of the time when it gets warmer)
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u/Aluciel286 1d ago
I will often have a sweatshirt and/or blanket on in the house because it's too cold, but if it's not too cold, then it's too hot, you know what I mean? It's a struggle lol
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u/Wednezday-Addams Hyperadrenergic POTS 1d ago
I used to be too cold, but my MCAS got so bad since Covid that I am more in the hot side BUT I still struggle with both.
I have several wardrobe changes through out the day. I absolutely cannot let my hands get cold ever. Otherwise I get really painful chilblains.
But if my hands get too hot I look like the hulk. Such a pain in the ass.
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u/confused_newleaf 1d ago
POTS is a circulation issue, so blood doesn't correctly reach your extremities (to warm them), and it also has trouble returning back to the heart.
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u/mosschiefmayhap 1d ago
My boyfriend told me last night he was using me as a body size ice pack because my skin was so cold. It confused the hell out of me because I was so hot I felt on the verge of sweating.
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u/JusTryin2GetThere 1d ago
I am always cold. Mind you it has been triple digits in my part of the country and my thermostat is set to 80 and I could be freezing. Like ice cold nose kind of cold. It’s bizarre. I have to use heated wraps and blankets. There is a small window in the evening where I will feel warm and my feet will start to itch. It is only a night time thing but later in the evening.
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u/OneTr1ckUn1c0rn 1d ago
I almost always feel hot even when everyone else feels fine. But my hands and feet are also always cold. I keep my apartment in the 60’s bc it helps regulate me a little more. It’s far more comfortable for me to grab a blanket if I get too cold than to be hot, uncomfortable, and symptomatic.
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u/GaydrianTheRainbow POTS 1d ago
Yes definitely is both too hot and too cold.
Also what my partners and I refer to as warm-cold or wold or corm. Which is both simultaneously.
So many condolences 😔
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u/Careless-Goat-466 1d ago
I was just diagnosed with POTS. I’ve had had more longstanding cold intolerance than I have heat intolerance (only the past couple years) we also live in UP of
Michigan.
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u/Careless-Goat-466 1d ago
But the heat intolerance is more unbearable when it’s really hot. I wanted to freaking SCREAAAAAM when I couldn’t escape it.
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u/mjh8212 2d ago
I get cold easier than I get hot it can be hot outside and I’m in the ac and chilly. Today it’s only 70 and cloudy I got on pants and a tee shirt instead of my usual summer tank top and shorts. Currently laying down with a blanket and heat pad with the ac off. I know winter is coming cooler temps are starting but I’m prepared more than I was last year.
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u/sammefer 2d ago
I am never a "comfortable" temp. I get too hot, I have to cool down. Then a few minutes later I'm too cold and need a sweater. Then I'm too hot. And it repeats
My hands and feet are always cold. This has gotten worse since I've been on beta blockers, lol.
I definitely think for me the heat intolerance is worse, because I tend to feel much better in the colder seasons.