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linda C

Raynaud's of the Lips

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Hello, I was wondering whether anyone had any suggestions for numbness and whiteness of my lips? My hands are bad at the moment, with cold, but I can manage with fingerless gloves. What can I do about lips? I am reluctant to drink too hot drinks. Thanks.

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Hi Linda,

 

I get Raynaud's of the lips (and tongue) sometimes when I eat or drink cold things. Sometimes my lips and tongue just turn cold and numb for an extended period of time, and other times it is painful. What I do is normally try to avoid cold food and drinks. I favor warmer foods and drinks -- but never too hot, as that can also cause attacks of Raynaud's (not to mention burn the tongue).

 

If I am just plain determined to eat the offending substance, then I try to eat it slower, to give my lips and tongue a chance to warm up between bites, or use a straw to bypass the trouble zone. But really, avoiding attacks in the first place is so much better! If the attacks are too severe for you to manage, you can ask your doctor about Treatments for Raynaud's.

 

Did you know that we can get attacks of Raynaud's anywhere in the body? Most people think it's confined only to the fingers. But for some of us it can also occur variously in the toes, ears, nose, lips, tongue -- even nipples (which is excruciatingly painful with breast feeding) or in the lungs, causing coughing when breathing in cold air. Read more at What is Raynaud's? on our main site.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Linda,

 

You might try using one of the heavier petroleum jelly based lip balms and put it on fairly thickly and often. It works like the grease long-distance swimmers use to seal out the cold and seal in the heat. You can do something similar with your hands and then put cotton gloves on to keep from leaving marks on everything you touch. That's an old moisturizer trick but it is pretty warming too.

 

Warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Sounds silly but I have worn a scarf over the lower part of my face and nose when it has really bothered me. It does work.

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The scarf doesn't sound silly to me at all!

 

I often wear a 'headover', a tube that's about 7 inches high and about 11 inches wide when it is folded and lying flat (does that make sense?) a lot. I can't stand turtlenecks anymore (too tight around the throat), but missed their warmth. I had one skein of hand-spun yarn with nothing planned for it so I knitted one of these things and fell in love with it. I'm currently knitting one out of pearl gray linen for summer wear. You can find them in most outdoor shops and they go by various names: cowls, smoke rings, headover, and so on. My hubby had bought me one out of bright red fleece - the label says it is turtle fur!

:lol:


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi,

 

What ideas! I've got all manner of warmers too and some you've suggested I haven't had a bash at!! I wear those scarves the kids wear, point at the front and wrap around - trendy too! I know this sounds wacky, but, I get attacks of Raynaud's on my tummy, barmy or what! You'd think it would be easy to sort, wearing clothes but, its far harder to sort than my hands and feet, takes longer to "come back" to normal any ideas?

 

Love to all,

 

Lynn xx

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