DOES ANYBODY ELSE SUFFER FROM RAYNAUD... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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DOES ANYBODY ELSE SUFFER FROM RAYNAUD'S LIKE I DO?

LisaB356 profile image
6 Replies

Not only do I suffer in my hands and feet but my entire body suffers...externally and internally. Meaning my entire outer body reacts to the cold as does my mouth, cheek, gums, and throat.

Anyone else out there like this? I've yet to meet or talk to someone with similar complaints and it's maddening.

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LisaB356 profile image
LisaB356
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6 Replies
cookie74 profile image
cookie74

i do too,, i ave had it 18 years now,,since i was 18,, but i also have scleroderma (crest) since i was 19. my mouth,,nose,,ears, get cold,, my body stiffens, i find it hard to swollow, as my mouth and asophagus ave shrunk, ulcers on my fingers and knuckles,, ha a finger apputated 3 year ago,, i just keep as warm as possible,,go out when i have too!! heated gloves and scarf,, and warm my face with them,lol good luck n take care lisaB356 :D

sgbee profile image
sgbee

I too feel like my entire body has Raynauds! When I drink a cold drink, I can feel the cold spread from my stomach to my whole body. Going outside in winter is something I have to force myself to do. I wrap up in scarves and gloves and heavy coats. I'm moving south as soon as I can!

Willow1604 profile image
Willow1604

i do ive only just been diagnosed does anybody elses last for hours?! and sometimes even days im actually scared to go out into the cold now because of thepain

pcokfarm profile image
pcokfarm

I'm finding as I get older, I'll have an attack, then be left with a residual dull ache that lasts for days. I don't think I have a severe a case as some others on this list.

pcokfarm profile image
pcokfarm

Try a hot tub treatment. I bet you could even get a prescription for one.

Tulip73 profile image
Tulip73

I have the same thing, drinks have to be at room temp...no more cocktails full of ice for me :( I can't eat ice cream as my whole mouth swells including my gums, if I dare eat something cold I have to have a hot cup of tea on hand. On many occasions my lips have been that bad I have had to have a hot bath and submerge then under the warm water to get them to calm down. It is the throat swelling that I find the worse thing sometimes I feel like it is hard to breathe, these days I try to avoid anything cold although in hot weather it is hard to resist.

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