Snowbird

Raynaud's question

11 posts in this topic

Hi everybody

 

I'm curious...I'm certain Ray has been befriending and visiting me since last August....and he seems to like my feet (which is a normal thing with him), I know :lol: B

 

BUT...when he visits you, does he visit your hands too and at the same time? I ask because my hands absolutely hate the cold and have for years, the same as my feet & nose...but I've only ever noticed my hands to not look right one time....where my feet have been blanching, paining, etc, for several months now whenever they get cold.....I've since loaded up on extra warm socks, etc, and everything to try to keep them warm. Thanks.


Sending good wishes your way!

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Hi Snowbird,

 

My hands, feet, and nose usually all get cold at the same time. The toes and fingers both blanch, hurt, burn, turn purple-red, and so on. I suspect this is one of those things where everyone is a bit different. You would NOT believe how many layers of clothes I can get on at any one time in the winter. :lol:

 

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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Showbird,

Jeannie's right in saying "everyone is different." My hands can be freezing and my feet toasty and vice versa. I try to keep the whole body warm because that helps the extremities, but sometimes those toes and fingers have a mind of their own. My toes get cold mostly when I walk outside or around the house without shoes on.

 

If these episodes are lasting that long, you really should mention it to your doctor. No matter what, you need to get the blood flow back as soon as you can.

 

Try to Stay Warm Darlin'


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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For me it's always hands first, usually my right index finger, then hands, then feet. Sometimes my feet can stay cold for hours (i use those hunting warmers in my socks).

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Hi Snowbird, the pattern of my attacks vary , but most often get just the hands on their own - I have several epsiodes every day- (winter and summer), although never have a 'white' phase , they just go blue. I do get attacks in the feet , although this winter not too bad due to the best thing ever - my sheepskin bootees which I wear all the time round the house, they were really expensive at £85 but worth every penny! In summer get many more attacks of both hands and feet together, even get attacks in my feet in the hottest weather (obviously being the UK that is probably like winter temps to some of you!) as the slightest breeze sets them off. Do you take anything for the raynauds e.g calcium channel blockers? - If not perhaps you should ask your dr whether you need medication. My rheumatologist impresses on me that each attack can cause damage- hence need to minimise as far as possible.

 

X Lizzie

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Hi Snowbird:

 

I've always had my hands and feet work in sync. I can be toasty warm all over, and then suddenly my hands and feet will turn icy cold! Lately, my nose has decided to join in, so now I have 3 areas to try to warm up!

 

When my nose gets cold, I also notice that my two front teeth feel icy cold, too, and my nose feels very achy. Very strange indeed!

 

I guess I can be glad that I have two front teeth to get cold, it would be worse if I didn't!

 

Raynaud's works in mysterious ways. I hope this helps you!

 

Warm wishes,

 

Janet

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Hi Snowbird

 

I have lots of attacks and there never seems to be a pattern to them. Generally my hands are the worst because they are more frequent (at least 3-4 times a day) but I also have them in my feet especially while having a shower in the morning! My nose gets very cold too but at least it doesn't turn white like my hands & feet. I don't know how long that's being going on but my hubby says it's like the nose of a thoroughbred dog - always feels cold.

It is important like Lizzie says to keep warm all the time & to avoid having attacks because they can all cause damage.

 

Stay Warm

 

Jensue

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Hi there....guess mine have a mind of their own too, can't say I'm surprised though ;)

 

No, I'm not on any med's for it...my episodes are not lasting long (maybe 1/2 hour or so max only on some days but they are not turning any other colour)...they definitely blanch, go tingly and my toes feel like they are curling when they're cold, my big toe has pained on occasion with it but definitely not severe like some of you have it...will continue to monitor and speak to my doctor about it though. Will also mention to my rheumatologist in July too.

 

Thanks everybody.


Sending good wishes your way!

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hi there ..i have been dignosed with Raynaud's, i have it in my feet hand, but I know my bum :( feels it too, when I get so cold I curl up in bed with my electric blanket and I have to sleep if I have an attack of Raynaud's , is this normal ...................jaxsxx


live life for today and not for tomorrow

 

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Hi Snowbird,

 

Ears and face need to be protected also.

 

I also have Raynauds and it's important for us to take care, as everyone has mentioned.

Another thing I would like to add is to confirm whether or not you have Raynauds. If you do,

medication can alleviate the stresses colder weather brings on.

 

As Janey, Lizzie, Jensue and others mentioned, it's so important to take care, staying warm also.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I get it mostly in hands and ears - sometimes my feet, but less so. What really gets me is getting things out of the fridge and freezer and cooking them. Cracking eggs is almost impossible as it is hard to do so with gloves on or a towel wrapped around them, which is what I do when I am handling cold items from the fridge. I always wear gloves outside and a hat to cover those ears. It has not gotten my nose yet - thank goodness.

 

Just keep working around and see what works for you - as you can see from the range of responses here, the disease gets expressed differently in everybody and what works is different. Just keep trying so you don't loose your quality of life.

 

jill

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