Cold Intolerance: Hello all I have worsening... - LUPUS UK


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Cold Intolerance

Ophelia1 profile image
34 Replies

Hello all

I have worsening cold intolerance. This year it has become really awful. I am miserable in my house if the heating is not on, unless I wear a full length down coat (bought for this purpose) with hat, north face slippers and fingerless gloves. I also have a heated blanket. My best friend tells me I look as though I am about to set off for the Antarctic, when in fact I am sitting at my desk WFH.

Emigrating to a hot climate seems the only solution, but I can't do that yet unfortunately :( Anybody have any suggestions for dealing with this problem? It makes me more tired and less inclined to feel like doing any exercise.

34 Replies
stillsdisease profile image

I believe if your working from home you can claim for some heating costs.....

Ophelia1 profile image
Ophelia1 in reply to stillsdisease

Thanks stillsdisease. I'll look into that, though I think I'd need the heat on all day at full for any relief and I'm not sure my employer would cough up the cash for that 😀

stillsdisease profile image
stillsdisease in reply to Ophelia1

found this

Screen shot
Louby1954 profile image
Louby1954 in reply to Ophelia1

Feel your pain same for me. Government helping out hit my bank account this morning hope it hits yours too.Air fryers are good too as well as throws. Good luck

stillsdisease profile image

any help would be worth having. Employer wants effective employee....... they will be more receptive then you think.

MonicaT profile image

I feel your pain! There is a very simple form online for tax relief you can fill in for working from home that may help you a little. Just google it.I also find if you have the energy get all wrapped up on the days the sun shines, and go for a little walk up your street and back. 10mins there, 10mins back, or whatever you can do. I always feel happier for doing that in the winter sun. Then back home into your Antartic clothess! 😊

Ophelia1 profile image
Ophelia1 in reply to MonicaT

Thanks for this MonicaT. I will try the frequent short walks and see if that makes a difference. 😀

cathie profile image

you mention exercise but I wonder whether a gentle regular exercise might boost your circulation and warm you up? I’ve got a floor pedal thing and try to do a few more every day. Might help

Ophelia1 profile image
Ophelia1 in reply to cathie

Hi Cathie - I do try to do some aerobic exercise every day, and I do feel lovely and warm afterwards, but it is amazing how quickly I get cold afterwards. Conundrum 😀

cathie profile image
cathie in reply to Ophelia1

I was really telling myself in answering you! I sit at my computer with a pashmina round my shoulders and back. Hot drinks are another good thing. And the cat often joins me for after lunch doze. X

WinterSwimmer profile image

I agree with Cathie. I work at home and am sometimes horribly cold sitting down. The solution (for me - at any rate) is to force myself out of the house for as brisk a walk as I can manage. Half an hour later I am warm, and the effect seems to last a while.

That said - being cold is miserable, and I sympathise. I do know how hard it can be to motivate oneself to do anything while feeling stiff from the cold.

Ophelia1 profile image
Ophelia1 in reply to WinterSwimmer

Hi WinterSwimmer -I do a session of aerobic exercise every day, but I still get so cold, so quickly afterwards. The bath and the bed are the only two places where I can feel warm permanently 😀

WinterSwimmer profile image
WinterSwimmer in reply to Ophelia1

Hmmm, tricky. I wear M and S thermal 'heatgen' vests, with one or two jumpers over the top. They do thicker, fleecy ones that are super-warm and this year's are lovely and long in the body. Today, I have on a long sleeved thermal vest with a woolly jumper over the top, with a baggy fleece over that. I always wear leg warmers and tuck my trousers into them to stop the cold going up my legs. I also wear a woolly hat - only partly because of the cold, mind you, as I am pretty bald at the moment and am keen for no body to see! Sometimes I wrap my bottom half in a blanket.

I'm sure you know how to dress warmly for work - and I don't mean to lecture you - but it is so horrid being cold that if any of this is even a bit helpful it is worth saying. Staying hydrated is also important - and for me, getting up and moving around regularly is also important (I have a tendency to sit at my desk for hours without standing up - unless I make myself move). I often also use a hot water bottle - either under my feet or stuffed down my front.

Anyway - I'll shut up now - I can see that loads of other have said the same below and I am just being boring (Sorry!)..

Chris21 profile image

I assume you don’t have the heating on because you’re trying to keep costs down? Can you not put the heating on in just the room you’re working in? If not, I suggest you get up and move around every half hr or so which will help circulation and drink plenty of warm drinks or soup. Nothing worse than feeling cold with achy joints.

Ophelia1 profile image
Ophelia1 in reply to Chris21

Hi Chris21 - Yes, it's the costs which prevents me from keeping the heat on. Too expensive, but I'm definitely going to try a short brisk walk hourly to see how that goes.

Krazykat26 profile image

I wear layers..a thermal long sleeved shirt with something or two over the top. All good advice above. Only thing I can think to add is watch the gaps!! I've found that if my neck is exposed I still feel cold. So as well as all your clothing think of ankles, wrists n neck. I wear leg n wrist warmers and a silk scarf round my neck tucked into my top.One more best friend right now is my hot water bottle! I tuck it in my coat when I'm out but that's coz I'm in a wheelchair n I'm thinking it would help u if your work involves sitting for long periods.

I hope u find some solutions there Ophelia 🤗Being cold is miserable n depressing 😔💜🌈😽😽xx

Ophelia1 profile image
Ophelia1 in reply to Krazykat26

Hi Krazykat26 - Thanks for this. I have one of those heated blankets which I often use while seated at my desk. That is very cosy. Sometimes I have a hot water bottle too on the floor for my feet. 😀 Nothing seems to work fantastically, but layers and heated items are the best.

MrsMarigold profile image

I am thinking as you say your cold intolerance is getting worse that it is a good time for a GP appointment to investigate

thyroid function and hormone levels. Not sure of your autoimmune issues but as the journey progresses you may find relief with new, different medications. For me, HRT helps tremendously with these issues.

Ophelia1 profile image
Ophelia1 in reply to MrsMarigold

Hi MrsMarigold - I have zero faith in my GP, who has little, or no interest in lupus. I have to push for everything. I don't think my GP is any worse than other GP's. I have no faith in any of them, but last time I had those bloods taken they were okay, however that was several months ago, so maybe I will ask for them again now. Good plan. 😃

DorsetLady profile image

Few ideas in this blog from Flexiseq - about arthritis specifically, but probably applies to you as well -

Ophelia1 profile image
Ophelia1 in reply to DorsetLady

Thanks for this DorsetLady

Boeingbabe profile image


Ophelia1 profile image
Ophelia1 in reply to Boeingbabe

Hi Boeingbabe - Someone else has mentioned that too. I haven't had those bloods taken for a while, so it might well be worth having them done again. Thanks for your suggestion.

Boeingbabe profile image
Boeingbabe in reply to Ophelia1

Yes, you'll need a full thyroid panel. I have hypothyroidism and experience similiar when under- corrected.

cathie profile image

I’m mass producing knitted draught excluders for family who have to be careful with bills. I’m not sure how to distribute them as I fill my existing orders. Any ideas? They look like woolly earth worms. I thought of approaching local food banks.

Ncut profile image

I feel for you, as I to suffer from the cold and my solution has been to invest in a electric throw. This only costs pence to run and is wonderful at keeping me warm and cosy. I’ve had it for two years now and wouldn’t be without it. My grandson has now asked for one for Christmas. I have started to do some walking which helps enormously. Hope you find a solution to your problem.

Poshcards profile image

I too have heating on 24/7 as I cannot bear the cold, I am also a pensioner so dreading the energy bills x

stillsdisease profile image

Light weight ruck sack ( child’s) with hot water bottle inside worn front or back combined with thermals and warm feet do a good job.

MrsMarigold profile image

Hawaii!!!!! Lupus in Hawaii sounds almost like a vacation everyday😂

MrsMarigold profile image

I’m in the South US. We get cold too in winter and this winter as we all know is challenging with heating cost. I will admit to wearing 2 bathrobes and ugg boots. I bought the uggs on sale last year after the Christmas rush so had to take color offered which is shock pink. 😊 They are worn inside only and really help my cold feet. Until they get too hot🤨🌼

Paprika60 profile image

You have my sympathy! I suffer from 19 degree and down. The cold and wet combined in England is probably the worst kind for me. Not just my muscle stiffness but I actually start having brain fog and cannot function properly. I basically freeze. So I have to keep the heat on...I have absolutely no choice as I cannot function and feel so unwell.

One item that may help you is Black Seed oil pill (Nigella Sativa). It warms your body. I can only take half of recommended daily dosage as my system is so weirdly sensitive. It is supposed to balance immune system and reduce inflammation. Once I started taking, I definitely have noticed that I feel less cold. Look into it. Hope that helps. Take care!!

Lucky053 profile image

Cold intolerance : Hello opheliz1. I have a bit the same problem. I wear twice underwear + 2 shirts + 2 pulls. When I am on PC= my feet are in a heating feet cover. my feet are in an electric feet warmer like a double slipper. Because I have ME, I have to rest many times, but the completely flat, and with heated underblanket and often an insulating mat on my legs because the cooler blanket causes a cold sore! I need also my shoulder have then to be extra covered. Such heated underblanket, I need in my sofa and bed, of course with good upper cover, and this till summer, at 22° C , sometimes till 23° in house. I have extra cold pain in left leg and right shoulder, that is caused by my spinal cord that is slightly compressed in my neck and pelvis, due to inwardly grown arthrosis of the vertebrae there. I also have cold intolerance for my lungs, so I can’t walk outside when temperature of the air or the wind is lower than 19° C. I have COPD, and already had 2x a collapsed lung. We all have to walk a bit, but at this temperature 19°C or lower, or colder wind, I have to cover mouth and noise, so the air is already warmed up before enter my lungs. (I can only drive bicycle if temperature is minimum 24° C and no wind. Even then I have to protect my lungs extra with a tissue under my shirt. Of cause I don’t support a chamber with air conditioning, bu even by ‘lung specialist’ there is air conditioning in summer ?! – Now my health is better than in period 2014 till February 2018: the I had also problems with my intestines. When I move a bit, light work inside, or walking 20 minutes on moderate pace then I start to sweat a lot, and because my underwear is damp to wet, I am dying again (= 15 to 20 minutes extra work for 15 to 20 minutes of walking + wet clothes more difficult to dry in winter!). In this period (4 years), many times I felt as having fever, while my temperature was far too low= 35°-35.2° in my armpits, instead of 36.8° degrees. On google, I couldn’t find reasons or description of other cases (. - Luckily I am better now, and with special isolated apartment (insulated suspended ceiling), with 2 neighbour appartements (a cold outside wall is too painful for me), so I can sit and rest with only 19) C, and like I described , a lot of clothes and heating system. My head is no problem. But when I catch a cold then I have to go 2° C higher or cover noise and mouth.

So, I hope u feel better , to know u are not alone in this world to have cold intolerance. (also I’ve forgotten: I can’t take shower, I have to wash me in pieces, that means washing me in parts, keeping my other garments on me (or: the chamber has to be 27° C and more, otherwise I am shaking of cold for almost 1,5 hours after washing me ?!) . Lucky053.

Ophelia1 profile image
Ophelia1 in reply to Lucky053

Hi Lucky053 - I know exactly what you mean about the shower. I have to force myself to shower daily but I am dangerously close now to not bothering. Many years ago, in a different galaxy I worked as a RGN and (this was old school when elderly patients all got a bath - whether they liked it or not on admission) all of the oldies used to cry and wail when we would make them come to the bathroom for a wash. 40 years later I can empathise :)

Elise3457 profile image

Hi I don't know what you can do..Im the same and live in a cold area and cannot move..Its not good I know.

Wish I knew the answer


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