Extremities freezing, overheating core! - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Extremities freezing, overheating core!

gindy profile image
13 Replies

Anyone else get this, whereby your hands n feet are really, really cold but in your core you're overheating? I'm finding it quite difficult to keep my hands and feet from going into a Raynauds attack without seriously overheating my core.

Gloves and thick warm socks aren't cutting it, even hot water bottles only work whilst I'm using them. As soon as I get up to even just make a brew (few minutes away from heat source) I'm going into a Raynauds attack. But my layers are actually overheating me whilst at the same time my hands are that shade of dead grey 😟

I don't know why but this latest change of season leading into winter has been the most difficult I can remember... I know as I get older (I'm 42) my illnesses will get progressively worse, I guess I just wasn't expecting it to hit me this badly just yet. Mind u, I'm digital ulcer free atm, just about. It could be worse is definitely my mantra.

Sorry for the rambling monologue 😱

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gindy
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13 Replies
Cjhoward profile image
Cjhoward

I understand your pain. I'm 38 and have raynaulds as well.. I've been having problems as well..sucks big time

tredgirl profile image
tredgirl

Hi

I find I'm unable to regulate in extremes of temperatures. If it's cold it's unbearable but similarly, if it's hot I find that a struggle too.

It's a real nightmare.

gindy profile image
gindy in reply to tredgirl

It's great to know I'm not alone, but do you guys have both extremes at the same time? So a Raynauds attack in your extremities while feeling overheated in your core tredgirl Cjhoward ? I'm thinking it could also to do with my age and that time of life, I know I'm young for the menopause but it's not unheard of. Hmm, I may just mention that to the doc the next time I'm there.

tall-tim profile image
tall-tim

Hello Gindy. I am sorry to hear about your sore trials. What medication are you on for this?

T

Lyndabickley profile image
Lyndabickley

Hi Gindy

I get exactly this. It makes sense as the peripheral circulation closes down your body cannot radiate heat from the core. The best solution is a vasodilation drug. I use sildenafil which helps although it does give me a hot spell with a red face when it reaches its peak. I' m supposed to take them 3 times a week but only take them if I'm feeling raynaudsy as they can cause a slight headache too. Lynda

Lyndabickley profile image
Lyndabickley

I mean three times a day!

gindy profile image
gindy

tall-tim Lyndabickley I'm taking adelat which is nifedipine I think. I'm not sure how much it helps, but this also gives headaches.

gindy profile image
gindy

It's the slow release 30mg version if that helps?

fairy56 profile image
fairy56

Hello Gindy, I also have same problem as you, navy blue fingers!!!! and a couple of toes, and being very hot at the same time!! I am 60 so well past the menopause, there are times if I wear mittens I get even hotter.

Richmi profile image
Richmi

That's what Raynaud's is all about. I'm 63, live in CA and my digitals are always cold. This is only Primary Raynaud's. I take 5000 mg of Moringa each morning and afternoon. It helps a little. But will take any help I can get. I buy Moringa at Puritan Pride.com

gindy profile image
gindy in reply to Richmi

I'm in the UK Richmi so your source is likely no good to me.. But I'll definitely check out moringa it's not the first time I've heard it mentioned.

I'm just having a hot chocolate toddy (shot of brandy in it) before bed :) one of my pleasures that helps me sleep!

Stay warm folks (lol a bit of an oxymoron in this instance) !

Just discovered this site today on the HU board. I've probably suffered from Raynaud's most of my life but was first diagnosed 16 years ago. I have had all the symptoms for as long as I can remember, as I child I often used to wonder why my hands & feet seemed to get colder than the other boys & girls in winter. Even later in life I never did question it until my doctor told me. He warned me than whenever the air temp fell below 15C I would start to lose the circulation in my fingers & toes! He also told me to buy thermal underwear - especially a long sleeved vest (maybe because he noticed I always wore short sleeved shirts!) - since then I've worn them every winter.

I also find that sometimes my body is very warm but my hands & feet are freezing, even turning white! Though I can't remember them turning blue. Even as I write my hands are pale & cold & I feel a little numbness in my toes! Yet my ears are burning! (Somebody talking bad about me???) :-D

GGhere profile image
GGhere

I get so cold I stand under a hot shower so I can get warm all the way through. I've had to stop eating ice cream, even in summer, as I can feel the cold inside me ages after eating it. Crazy isn't it? I think I need to go and live in a hot country.

Keep warm everyone.

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