Feeling so cold !!!!: Hi all - My lupus seems to... - LUPUS UK


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Feeling so cold !!!!

Ophelia1 profile image
21 Replies

Hi all - My lupus seems to have taken a new turn. I've had intermittent raynauds since I was first diagnosed a few years ago, but recently I am experiencing really pronounced problems with temperature regulation to such a degree that I dread climbing out of bed in the morning - so coooold and often feel cold all day despite wrapping up and using electric blankets while working. Yesterday I kept my down jacket on all day, though the rest of the family were in t-shirts. Sometimes I find that I don't feel properly warm until just before I go to bed, which is horrible. I've been reading about this and have learned that if you do suffer with temperature regulation, it is important not to allow yourself to get cold, as this can trigger a flare. Any suggestions would be very welcome. I have been thinking about investing in a down onesie - if such a thing exists :)

21 Replies
Ophelia1 profile image

Hi Spanielmadlady - it's true that the down onesie may be impractical, but the idea of being cozy makes it so tempting to get one. Seriously though, I am wondering whether others with this issue have discovered fixes, or ways of dealing with it that I haven't managed to think of. It's a horrible problem, and the worst thing for me is getting up in the morning, both because of the morning fatigue (which for me is appalling) and because the contrast between the bed and room temperature is so great. Brrrrr

Tanitani profile image
Tanitani in reply to Ophelia1

What temperature do you keep your bedroom/house on?

Poshcards profile image
Poshcards in reply to Tanitani

mines on 21* 24/7 x

Tanitani profile image
Tanitani in reply to Poshcards

See if increasing the temperature helps. I have mine between 22 and 25. I also installed in the bathroon heated floors.

Spanielmadlady profile image
Spanielmadlady in reply to Ophelia1

Sorry didn't mean to offend.i don't play down anyones symptoms. I just look at the lighter side of life...inc my own xx

Ophelia1 profile image
Ophelia1 in reply to Spanielmadlady

Hi Spanielmadlady - No offence taken :)

Lizard28 profile image

Hi, I’m always cold as well and once you get cold it’s really hard to warm up. I have three different blankets dotted around my house, I always need one especially since the hike in heating prices. My clothes are usually on the radiator after a hot shower. Hubby bought me an Oodie, it’s great but so hard to take off it’s so cosy. I wear socks in bed as my feet are always cold. My gloves and hand warmers are always with me, it would need to really warm before my gloves come off. Going on holiday soon so hope that warms me up but I will need to keep covered and in the shade. It’s the illness that keeps giving. Best wishes x

Ophelia1 profile image
Ophelia1 in reply to Lizard28

Hi Lizard 28 - I'd never heard of an Oodie until now. Rest assured that I am now getting one!!! I think I'll need to keep gloves near me now and handwarmers, plus wear socks always. Perhaps this has been my problem - letting my hands and feet get cold, because once they get cold it's a total disaster.

Tanitani profile image

Yes, please make sure you are warm. I found that for me temperature regulation has to do to some degree with stress, and with movement. I have to move from timw to time otherwise I will get really cold AND i started practicing resilience to stress through some apps and some breath excercises warm me up. Also i have trouble faling asleep if i feel cold so I have some sort of thermoform and go to bed with it.

Tanitani profile image

And sometimes thebonly way to get rid of feeling cold if a hot bath! That always does the trick. I should start doing it each evening. It relaxes too..

Ophelia1 profile image
Ophelia1 in reply to Tanitani

Hi Tanitani, I totally agree about the hot bath. It always works :)

Royf profile image

I'd say the cold is a main symptom for me and scores just behind pain and fatigue. I've had a small heat pad for a couple of years now which I bought for pain but recently I've bought a heated throw which I can use when watching TV. Problem is if I crank the heating up the wife and son moan it's to hot and let's face it who can afford heating now. What amazes me is there's no help with energy bills for us and other people with auto immune problems. I think that needs to change.

Ophelia1 profile image
Ophelia1 in reply to Royf

I totally agree Royf. I have heated blankets dotted about the house, and use them all the time. It would be nice to be able to turn up the thermostat too, but with heating costs rising all the time, that's just not going to happen.

Krazykat26 profile image

Hi Ophelia 🤗Yes I get very cold too. I tend to start getting dressed before I get out of bed in the morning. I'll put my socks on and a thermal long sleeved top then get back into bed n warm up for a while before I even contemplate getting up.You can wear up to 4layers of clothing so if I'm going out I have thermal tops and leggings that I put under my trousers. I tuck my thermal leggings into leg warmers too..no one can see them but they keep my ankles n calves warmer.

Layers is the key..a base layer n then your outside clothes. Tucking things in to I find helps..when I'm really cold I tuck my pj bottoms in my socks. Two pairs of socks when I'm freezing.

I've got an ooodie too with a hood..helps keep draughts away from my neck.

My favourite item is wrist warmers..I have a pair of cashmere wrist warmers which I wear more or less constantly..I can still do stuff around the house but they really do help to keep the warmth in.

Hot water bottle too..I pop that under my jumper on my tummy n that helps to warm my core.

I have hats shawls scarves n blankets dotted all around the house..oh and mittens for when my hands are stuck somewhere in Siberia!! 😹

It's awful I agree n I've been struggling with the cold lately with this changeable weather we've been having 😔

Mind you I'm a lady of a certain age n when a hot flush hits off comes a layer if I'm too hot..only to go back on again when I've cooled off. Sometimes though when I'm really freezing a hot flush is lovely..like having a little radiator all of my own!!

Hope there's something in there that might help 🌈😽😽xx

Ophelia1 profile image
Ophelia1 in reply to Krazykat26

Hi Krazykat26 - I'll have to adopt your approach i.e getting dressed in stages. It is so horrible to feel cold from the moment you get out of bed. Thermals are the solution I feel :)

MrsDarbyshire profile image

Hi Ophelia, I'm another who gets cold, to the point my hands and feet feel pain. Everything all ready mentioned, I do, even in the summer. I wear welly boot socks, all year round.It has to be roasting out side befor I strip off any layers.

With the new energy bill hikes, I'm sitting here, with no heating on, a long sleeved thermal vest, and a jumper that nearly reaches my knees.

For my hands, I have fingerless mits, the type that have a cover for the ends of my fingers, for when I'm extra cold.

I love washing up! It's the warmest my hands get without gloves.

When I first get in bed, I pull the duvet over my head for a few mins... Its amazing how hot your breath is. It will warm you up.

I agree with layers, and trying your best to not get cold in the first place. My mum who also had lupus, always said if you can keep your knees and feet warm, you will feel much warmer, and it seems to work for me. Oh, and sorry for stating the obvious, but wooly hats outside, one that will cover your ears.

I also love wearing the masks outdoors, they keep my nose warm!

If I'm cold after going outside, I always have a hot milky drink, horlicks is my favourite, but what ever you fancy, warming your insides helps massively.

*sending you warm hugs*

Ophelia1 profile image
Ophelia1 in reply to MrsDarbyshire

Hi MrsDarbyshire - I am going to try everything which you and everybody else has suggested. I think that I have not been layering enough until now.

Pumpkin2009 profile image

This is a bit different, but wonder if this happens to any of you as well. My hands, feet and nose will suddenly get more cold than usual and I feel like someone just pulled the plug. All I can do is get under blankets. Every part of my body is so exhausted and dead weight that I feel like I can't move. Sometimes, I fall asleep - just can't stay awake. This is a change for me recently than just being cold.

Healing hugs.

Krazykat26 profile image
Krazykat26 in reply to Pumpkin2009

Sounds like a question to put to the forum Pumpkin..if you post I'm sure you'll get a response and maybe some tips? 🤗💜🌈😽😽Xx

RAD120 profile image

Hello I have found a rechargeable battery operated gillet to be great help I also have a heated coat for venturing out in. There are lots on line but would recommend a less bulkier one that can go under your layers

Bowenlady profile image

Hi, I suffer with the cold too. My biggest problem is my feet. I see other people here saying 2 pairs of socks - no good for me! Unless my feet are warm when I put them in socks I will be freezing and in pain all the time. I have found that I cannot sleep without my electric under blanket on. I sometimes put it on number 2 or 3 before I go to bed to warm it up and leave it on number 1 all night. This way my feet are warm when I wake up and put them straight into sheepskin bootee style slippers. It’s a nightmare. I have even used it all through the summer, with the duvet folded right down over my legs because the rest of me is so hot because of the weather. I dread it when we go away to stay because I know I’ll have sleepless night. I have even slept in the slippers before now. My fingers can go white in the winter but I can avoid that by wearing insulated gloves all the time. I didn’t know about Oodies and have just bought one for me and my husband today, they look fab.

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