Constantly Feeling Extremely Hot or Extremely Cold - LUPUS UK

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Constantly Feeling Extremely Hot or Extremely Cold

BrooklyneDeanne profile image
25 Replies

Hi everyone,

I have been struggling with finding a comfortable temperature for a couple of years now, but over the last few months it has gotten really bad. I am always either extremely hot, or so cold I’m covered in goose bumps and shivering. I am very rarely at a comfortable temperature. This change can occur with the slightest of external temperature changes, and sometimes no external temperature change at all. I believe my body temperature is easily going up and down as well, but am not 100% sure. I do have frequent, intermittent fevers. Does anyone else have this problem?? It’s absolutely maddening and so uncomfortable. No matter what I do I either feel like I am cooking, or I’m shivering so hard it gives me a headache. Going from feeling burning hot to freezing cold can happen within minutes, or vice versa. Does anyone else deal with this?

25 Replies
PMRpro profile image
PMRpro

i think it is a feature of a lot of autoimmune disease. I used to be hot all the time - my husband liked the heating up high, I was dying of heat stroke! Now I'm alternating again ...

BrooklyneDeanne profile image
BrooklyneDeanne in reply to PMRpro

I think so too. It seems that no one else around me is struggling with it. I now just carry a jacket with me everywhere. It gets taken off and put back on multiple times a day, often in the same room, with pretty much the same external temperature. I alternate between heat stroke and frost bite all day, everyday. It’s enough to drive a person insane.

MrsMarigold profile image
MrsMarigold in reply to BrooklyneDeanne

Yes. Autoimmune diseases. I have hashimotos thyroid disease, lupus, EM,

Raynauds and more. Also menopause was awful that way. Literally needed a heat pad on my feet they would be ice blocks. Even in light of this, you need Dr. Diagnosis. Best, Titters

BrooklyneDeanne profile image
BrooklyneDeanne in reply to MrsMarigold

My mom has Hashimoto’s and struggles with it so bad too. It’s not fun at all!

Adnil2591 profile image
Adnil2591

My problem is similar in that I’m often extremely hot or cold, when others are not, but I have what I call ‘my head leaking’ when very hot. My body gets hot but doesn’t perspire much but my head and face run with perspiration so that my hair gets wet and the fluid runs down my face, neck and drops off my hair. Does anyone else get this phenomenon?!

BrooklyneDeanne profile image
BrooklyneDeanne in reply to Adnil2591

That sounds like no fun at all! 😢 I don’t have that but it sounds awful!

Whippet_lady profile image
Whippet_lady in reply to Adnil2591

Yes! That's me! I thought I was an oddity. It's so frustrating, and embarrassing, and washes off all my sunscreen. I hope somebody knows of a way to stop it. When my head's not leaking my fingers are suffering from Raynauds. Can't win!

Adnil2591 profile image
Adnil2591 in reply to Whippet_lady

I have had the same thought about sunscreen! 😂 With my tissue/kitchen roll dabbing and the perspiration washing it away it feels senseless applying it sometimes. I do however use a liquid foundation by ‘It Cosmetics’ that is Spf 50+ and stays put like glue. It’s a wonder product and worth investigation if interested. 🤗

littleeed profile image
littleeed in reply to Adnil2591

Morning all. I have had this phenomenon for over 2 years. It's worse at the moment. The thing is that I don't feel hot just look like I have just stood under a shower!!! Saw my rheumatologist three weeks ago did full blood panel and examination. No results yet. Didn't have to explain about the 'leaking' as he could see, but didn't think it was associated to the SLE. Said to discuss with GP if nothing unusual showed in bloods. I have crystal reiki and when I was there last week after the session finished she said my energy was all over the place including my thyroid area being one of them. She also commented over the extreme cold of feet and hands. I also have been unable to keep my feet warm. I know many people don't understand how crystal reiki works but it certainly helps me. I too am pleased I'm not going mad and I wouldn't want anyone to have this problem it's good to know that it's not just me. xx

Feelgoodbooks profile image
Feelgoodbooks

I have the exaxt same thing! I thought I was going crazy! I go from being in a room shivering one second, to feeling like my body is burning the next. I have stopped taking my jumper off by now, I just sweat on it, because I'll take my jumper off and the next few minutes I'll be cold again and have to put it on. One thing that is always bloody freezing are my hands and feet! I have noticed my tenperature is around 37.2 to 37.6 at all times. Lately around 37.5 very often.

BrooklyneDeanne profile image
BrooklyneDeanne in reply to Feelgoodbooks

Oh I feel this!! My body temperature was 99.5 to 100.3 Fahrenheit almost always for like 3 weeks. 🥴 My hands and feet used to always be cold too, but now they are freezing or hot enough to melt to melt something it feels like. 🤦‍♀️ It feels like there is no break from it!

Feelgoodbooks profile image
Feelgoodbooks in reply to BrooklyneDeanne

I'm seeing the rheumatologist soon and I'll ask if there is anything for it. The only thing thay worked was taking the steroids, which made me think it might be due to the inflammation. If he gives me any advice I'll post here 😊

BrooklyneDeanne profile image
BrooklyneDeanne in reply to Feelgoodbooks

Please do! ☺️

Adnil2591 profile image
Adnil2591 in reply to BrooklyneDeanne

Yes, please do. I’m on Prednisolone, Azathioprine and hydroxychloroquine currently and that seems to possibly be working. I had same thoughts about constant inflammation but temperature is always virtually normal or low!! 🧐🤔

Paprika60 profile image
Paprika60

I used to get so freezing cold all the time unless it was over 25 degree. I would get cold in shade in summer! And could never be in a basement or wooded area. My legs would feel so wet and damp too. But since the menopause set in seriously I have exactly the same issue as you. And strangely I get very cold in one area of body more so than others. I have to go to sleep with gloves on when the room temperature gets below 20! It makes no sense but having lupus means one's body doesn't function properly clearly. I have noticed very elderly people put on heavy coats even in early summer because their bodies can no longer regulate temperature well I suppose. Being cold makes sense as blood circulation is poor for people with lupus but being so hot?? Extra crazy. I am always ready to take off layers or put on wherever I am. 😂

BrooklyneDeanne profile image
BrooklyneDeanne in reply to Paprika60

It’s so crazy! For about 2 years I was constantly freezing, and now I switch between freezing and super hot all the time. I’m only 24, but when I’m hot I feel like I’m going through menopause. 🤦‍♀️

stillsdisease profile image
stillsdisease in reply to Paprika60

winter layers:

Camisole, long sleeve thermal vest, long sleeve cotton t shirt, wool cardigan, heavy skirt with warm lining, thermal tights with socks underneath plus I keep a rug close by for my legs when sitting in the lounge and use a heated lavender bag for my shoulders. It takes ages to get dressed.

Paprika60 profile image
Paprika60 in reply to stillsdisease

🤣😂. Story of my life! I even got silk leggings to wear in between situation when it isn't chilly at all but just in case. Works very well except they wear off easily. But perfect for warmth and coolness. I do wonder if it will ever disappear...before I disappear that is.😇

stillsdisease profile image
stillsdisease in reply to Paprika60

I have some thermal leggings from our motorbike days sadly now long gone due to my limb stiffness but they are warm and snug under a skirt when out for a winter walk 😉

KayHimm profile image
KayHimm

I think it is so common to have unpredictable symptoms. You can be fine at 10:00 am and feel like you hit a wall at 3:00 pm. Have you ever thought about getting a consultation at a lupus center? You may not have adequate criteria for a lupus diagnosis but they may be comfortable giving you a diagnosis of undifferentiated connective tissue disease or « probably lupus. » The reason that could be important is that with a diagnosis you would get treatment.

Maybe others can offer an opinion. There have been some people with positive ANAs and symptoms who did receive diagnoses of UCTD after going to a lupus center.

Keep tracking that temperature and other symptoms.

XxK

BrooklyneDeanne profile image
BrooklyneDeanne in reply to KayHimm

Hi! I have not looked into this, but I have made note and will definitely be looking now. Thank you!!

stillsdisease profile image
stillsdisease

yes I’m familiar with this, even in summer I can be cold when everyone’s in summer dresses and bare legs. I always wear a camisole as if I shiver the pain in my ribs is unbearable plus it absorbs sweat and is easily removed if needs be. I always carry a pashmina in my bag as I’ve found keeping my neck warm is a big help. Extra ‘ mini’ socks inside shoes help keep my feet warm. My extremities can burn or turn blue at will, HRT has controlled menopause related flushes but feeling cold all the time remains an issue for me. Hubby has just turned then thermostat down a degree too as both took redundancy due to business closures during the pandemic and our OAP is years away. He says he’s not spending our savings on heating and there will be no hanky panky to keep warm as thermals are not very alluring 😆

Whippet_lady profile image
Whippet_lady

Do you do the bedtime Hokey Cokey with your duvet/blankets too? You put your left leg in, your left leg out, in out in out etc followed by your other limbs and whole self? Very frustrating. Let us know if you find a solution. Take care.

BrooklyneDeanne profile image
BrooklyneDeanne in reply to Whippet_lady

Yes! All night, every night. 🥴

Adnil2591 profile image
Adnil2591

With regard to shaking chills and fevers alternating, I had never had this before until January this year. Put it down to inflammation but early February I was admitted as an emergency to hospital with AKI.

Acute kidney injury - not exactly an injury but my kidney function suddenly dramatically dropped (picked up on a routine blood test ) and hence emergency situation. Sjogrens markers were raised and treatment was large steroid infusions and monitoring for 10 days in hospital.

Moral of the story, bear in mind it could be something serious so, if you’re at all worried, see a doctor. I knew I was unwell but thought it was a new lupus symptom. ☺️

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