really feeling the cold: Hi all, I think I wrote about... - NRAS

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really feeling the cold

Brychni profile image
33 Replies

Hi all, I think I wrote about this a few weeks ago when we had a tiny cold spell, but now the cold is here for good (probably) I am shocked by how I just cannot tolerate it. This morning, I was about to take the dog out just when my friend rang, the heating was just going off so I sat on the sofa with the dog and a blanket, was wearing several layers already but it just wasn't enough. After only about 20 minutes I was not only feeling cold but intensely tired, headachy and generally ill.

After the call I had to curled up with the dog and slept for about 2 hours. I woke up with the best part of the day gone and not feeling much better. Just inside the tip of my nose now has a permanent sore where it's constantly running because it's constantly cold. I'm going to post this on the Raynaud's site too, see if this rings any bells and what, if anything other people do . We've only had a couple of days of frost, I can't imagine how I'm going to survive the winter!

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Brychni profile image
Brychni
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33 Replies

I’m the opposite I’m hot all the time go outside for a walk wearing a jumper and a thin rain jacket and I’m sweating buckets.

Who knows what’s Normal I gave up trying to understand a long time ago. Hope you feel better

in reply to

Yes me too no jacket when out just a cardigan

Pulfs profile image
Pulfs in reply to

That's me also even in dead of winter 😡

Gnarli profile image
Gnarli

Are we related? Permanently cold at this time of year, I have heated throws, an electric blanket, a down coat, flip-top mitts, hand warmers, a cuddly dog, you name it I probably have it. I think the best thing for me is to get well wrapped up and walk the dog, keep moving and return home where I feel warm and re-energised. Luckily I can still knit which also keeps me warm. Sitting still makes me feel so cold

Brychni profile image
Brychni in reply toGnarli

Yes! It's the being still. I'm fine as long as I'm moving. But honestly, yesterday felt like some sort of 'attack ' and it's not the first time. Does it make you feel ill too?

Gnarli profile image
Gnarli in reply toBrychni

Now, this is just me but looking back at my diaries, it seems I get freezing cold just before the inflammation goes up. My flares aren't major heat, pain or swelling just a small increase in stiffness, fatigue, aches and pains so lucky there eh? But being cold makes me feel unwell. It always did

Brychni profile image
Brychni in reply toGnarli

That's what my 'flares ' feel like too. 😐 more stiffness than swelling.

Caza profile image
Caza in reply toGnarli

I’m the same & yes it does make me feel ill. I’ve been walking to the Heath with a friend, it’s probably about 3 miles maybe 4 we sit on a bench & have a coffee & a bacon bap delicious. I got back yesterday & just could not warm up. Fire lit heating on clutching a hot water bottle & still shaking joints screaming, still it was worth it ☺️ I also knit hadn’t realised but your right it does keep you warm.

cris1728 profile image
cris1728

I have been feeling the cold so much over the last few years too. I mentioned this to my Rheumatologist as I wondered if it was due to the Methotrexate but she told me it was not a known side effect of that but most likely due to the arthritis. I get so cold at work and wear loads of layers. Some of the staff keep opening the windows as they feel warm ( having just run or cycled to work) the type of windows do not allow for them to just be opened a bit and the wind really blows in. I was so cold a few weeks ago that I went hypothermic and couldn't stop shaking. It doesn't help that the Covid guidelines at work which were sent round have advised to open windows in enclosed spaces. I got to the stage when I was in tears on a night dreading going into work and how cold I was going to be. I even thought of leaving and was looking at other jobs. There is some good news at last though as it has finally been agreed that we can work from home after we have been trying since the start of the first lockdown. Should be doing this in the next two weeks. Sorry I haven't got any tips for you in how to keep warm but will let you know if I get any. Good luck and hope you find ways to cope with the winter. Xx

Brychni profile image
Brychni in reply tocris1728

It's horrible isn't it? I have started to fear certain situations too. Last night, my husband had been working late and when he came to bed he put his (cold) arm over me and it was such a shock I had whinced and told him to get off! 😔

Angjoplin profile image
Angjoplin in reply tocris1728

I get very cold at work too. I got a plug in radiator which I literally have touching me. I have cardigans to layer up. I also have fingerless gloves which keep my hands warm but allow me to type. I've been known to be sat there typing away in coat and scarf in the depths of winter.

Gnarli profile image
Gnarli in reply toAngjoplin

I used to have a little heater under my desk at work or I'd have frozen

Dobcross1 profile image
Dobcross1

Hi yes I've always really felt the cold. My hands and feet are cold even in summer! I keep turning the heating up and my husband turns it down again as he's boiling🤣😂. Oddly since increasing MTX to the maximum dose I can also get really overheated really quickly🤔🤷‍♀️. I always used to wear sweatshirts/jumpers but I've now bought some longer cardigans i can put over them as layers mean I can take on and off easily.

Brychni profile image
Brychni in reply toDobcross1

Me too! I go to bed with so many layers I look ridiculous!

Empress30 profile image
Empress30 in reply toBrychni

Omg I do too! But I have to breath cool air. My husband is like a bear. He will be perspiring and I'm I long comfey pants snuggley scocks,long sleve t -shirt, hoodie so I can pull it upon my head that keeps me warmer and ofcourse a heated blanket. I do this in the summer with the air conditioning too. Some days I can wear a t-shirt for awhile. Didn't have the problem before RA.

Fruitandnutcase profile image
Fruitandnutcase in reply toEmpress30

You sound like me, I’m the only person I know who can lie out in the garden sunbathing while wrapped in a blanket. Roll on summer.

You have just given me an idea - I was thinking the other night that I could do with wearing a hat - at that point I had a pillow over my head and another one that I was lying on - so I’ll need to get a hoodie for in bed. Thank you - you pick up so much useful information on here.

Empress30 profile image
Empress30 in reply toFruitandnutcase

Yes that is so true! Now I know why the women went to bed with night bonnets lol they kept warmer.

Angjoplin profile image
Angjoplin in reply toDobcross1

Omg the thermostat fight. I'll set the heating to be a nice 20 degrees for when I come home. Hubby gets home before me and turns it down to 14! 14 degrees is like the depths of winter. 😂

in reply toAngjoplin

It’s the opposite in my house. He’s layered up especially in bed I have all the windows open no heating in the room and I’m still sweating... hubby bought a thermometer a few years ago and every winter can be heard muttering. It’s bloody 6 degrees in here. He dresses in the bathroom it’s so cold.

Empress30 profile image
Empress30 in reply to

Thats like my sister and I. We go somewhere in the summer. I have a sweater and Jean's or long pants and a pair of flats. She has a short sleve shirt , capris and sandals. I have to he mindful of the air conditioning. I freeze!

Dobcross1 profile image
Dobcross1 in reply toAngjoplin

🤣😂

Fruitandnutcase profile image
Fruitandnutcase in reply toAngjoplin

14!!! I’d be hypothermic at that rate. Makes me shiver to think of it.

My husband jokes he got a defective model because I don’t seem to have a thermostat. I’m either frozen or far too hot. I have no happy medium.

Empress30 profile image
Empress30 in reply toFruitandnutcase

HAHAHA so true!

janmary profile image
janmary

I seem to be less tolerant of cold and of hot situations- Im blaming methotrxate because I have disturbed nights on days 2 and 3 after taking it, waking up all hot and bothered. In the end have to get up and potter about the cold house, wait till I feel cold, make tea, etc and try to go back to bed after a couple of hours.

Thingybob profile image
Thingybob in reply tojanmary

I am exactly the same! It takes ages to cool down enough to contemplate getting back under the duvet

janmary profile image
janmary in reply toThingybob

Gave up on the duvet - reverted to sheet and cotton blankets so I can peel like an onion!

in reply tojanmary

Me too smell like one on a particularly sweaty night 😂😂

janmary profile image
janmary in reply to

😂

Summerrain14 profile image
Summerrain14

I go from being too hot and then too cold. I seem to struggle more to maintain a comfortable body temperature for sure. My feet are constantly cold with the Raynaud’s though.

Fruitandnutcase profile image
Fruitandnutcase

You’re not alone, I’ve been so cold and very tired to recently. It’s only me, the house isn’t cold either, my husband feels fine but he accepts my hands etc are very chilly. I sit with an extra jumper on plus sometimes a wool rug, a hot water bottle and a microwaveable thing that I drape round my neck and a microwaveable physiotherapy mitt for my hand. When I go out I wear so many clothes these days that I’m sure people I pass must wonder who the freaky wrapped up person is. I know my thyroid is ok and it’s not under-active or anything so goodness knows why I’m so cold. The trouble is when your u feel cold I think your muscles tense up which does you no good. It’s horrible being cold. Maybe I need a dog and a couple of cats to arrange around me to heat me up.

Monkeysmum profile image
Monkeysmum

Hi Brychni. Like others I have always had bad circulation and struggled with cold hands and feet but it has definitely got worse since RD arrived and I am now formally diagnosed with Raynauds too. After I got a pretty nasty ulcer on my little toe a couple of winters ago, my Rheumatologist started me on meds for the Raynauds. First tried nifedipine which definitely warmed my feet but made me feel really dizzy and caused my feet to swell even more than they already do, so now swapped onto amlodopine, which seems to suit me better. I take from Nov to March to get through the worst of the cold weather. Might be worth considering meds options with your doctors?

Brychni profile image
Brychni in reply toMonkeysmum

Hi , when consultant offered me nifepine it was spring time so I said no! Might be about to change my mind; in Aldi yesterday I couldn't feel my purse, card or even get into my hand bag easily. Do you get it in both hands?

Monkeysmum profile image
Monkeysmum in reply toBrychni

Yes I get it in both hands, left worse than right, but my toes are even worse than my fingers, again left foot worse than right - no idea why! Also have a Rudolph red nose at this time of year! I have always said no to the meds also but the ulcer made my mind up for me, so painful. Xx

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