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Snowbird

Raynaud's

22 posts in this topic

Hi Everybody

 

Can anyone tell me...with Raynauds, will your extremities always eventually turn all 3 colours?

 

Curious to know if it ever stays just as blanching (wondering if that means it might be milder or does it simply mean nothing at all?) or if regardless, it will eventually progress and turn all 3 colours anyway?

 

Thanks!


Sending good wishes your way!

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Hi Snowy,

 

That's an interesting question and it will be interesting to hear everyone's answers. My guess is that no two responses will be the same, since no two of us seem to have exactly the same experience.

 

Personally, my Raynaud's often depends on how cold it is... if I get very chilled, I turn blue, or even if I get very anxious or upset sometimes. Or a change in temperature, say, getting in and out of a warm shower. My toes also turn blue so I have to avoid sandals. Restaurants and movie theaters can be quite a nightmare because of air conditioning. Last summer I was in 100 degree weather and stepping out of a pool I turned blue, it took me quite a while to warm up even in that hot weather. The friend I was with has small children who were amazed and totally riveted by my color changes!

 

I am not one of those people who had Raynaud's before having sclero, in fact I had none at all until months after other symptoms occurred which I understand is quite unusual. Strange, this disease is so unpredictable.

 

I'll be watching to see what other people have to say!

 

Good luck,

 

Mary in Philly


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Snowbird your question is a good one. Myself I only have had the white blanching of a few of my fingers at one time, on a somewhat regular basis. I dive or jump into our lake and I come up with three totally white fingers. A few times though not many I have had my fingers and toes turn blue. Only because I didn't have gloves or thick enough socks on when the weather turned cool on me. My mother and older sister have had Raynaud's almost all their lives but it hasn't progressed past the white stages ever. So, I guess it depends on how well you take care of your extremities or just luck of the draw.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Humnn....luck of the draw is likely it since nothing seems to be clear cut but I am curious! I'm going to ask my specialist when I see her in July to see what she says too.

 

Thanks, Mary & Sheryl


Sending good wishes your way!

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That was interesting. I have one friend with Raynaud's and scleroderma who seems to only get the blanching, another with Raynaud's and NO scleroderma who also only gets the blanching. I get all 3 and as time as gone by (3 years since diagnosis), the color changes have gotten more extreme.

 

One of the things that's also been interesting is how our normal skin tone affects how the changes appear. My friend without scleroderma has a fairly olive skin tone and with her the blanching is extremely noticeable and her fingers turn ivory colored. I've always been on the pink side and with me, it's the blue phase, I think. My fingers go an interesting shade of purple. That's supposed to be a good color for redheads! :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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I have to agree that this is an interesting question. For me I had just the blanching badly for a number of years but now get the full 3 colour changes and much more pain in my hands. Like others just stepping into a shower can turn my toes purple & just small temperature changes can bring on an attack. When my hands are totally blanched my husband calls it 'chicken fingers'!

Jensue

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Hi Snowbird, its amazing how Raynauds can manifest so differently in different people. I have never had the white phase. My hands just turn blue several times a day winter and summer, sometimes with pain , other times not. I don't often get a red phase either. I have tried lots of different meds, just started a new one this week which seems to be promising at the moment.

 

Lizzie

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Jensue,

I have no symptoms of Raynaud's, but I am curious of your reaction when you get in the shower. Is the water cold and that is why you have an attack or is it because the shower floor is still cold when you step on it and triggers it? When you have pain in your hands, is it the entire hand or only in the fingers that change color?

 

Thanks,

Cheryle

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Hi snowbird!!

 

My Raynaud' do all the colors. They get white first, then purple/blue and then red. When it is hot they stay red and swollen. The blue purple is what they stay the longest. Sometimes hours! I do not have much pain, just numbness.

 

Hugs

Nina

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I used to be more white first, now it is mostly blue-purple. My fingers stay that way longer too.

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Hi all,

 

My hands and feet go white then red, and my nose is always like an ice cube, even in summer. And if I get slightly chilled even for just a moment, my insides suddenly feel all 'jumpy' and I'm cold to my core.

 

Debs

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My fingertips used to blanch when I was younger. Now it's purple, and deep purple, and dead guy blue then bright bright pink/red.

 

My feet/hands also turn blue when I hit the shower also. The water is warm for me, but it seems that temperature difference, even slight, (warm to warmer) affects my color changes.

 

Kind of funny now that the weather is warmer, my Raynaud's has gotten worse!

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Cherlye,

 

When I get in the shower it can be just the slight temperature change that causes an attack or sometimes it's the shower base which is still cold when I get into the shower.

 

Deb, I know what you mean about your insides getting chilled to the core and it does become so hard to warm up again.

 

Jensue

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Hey Folks,

 

Here's something interesting. Scary, but interesting. A few years back I went to a science museum with my kids, and there was an infra-red camera there which was kind of amusing and fun to see the different color changes regarding thermal wavelengths from blue to orange to red and such. In other words, it shows warmer and cooler areas on the human body and surroundings. Like on the science channel stuff.

 

Everyone was in line and all the other people had red (for warm) cores and cooler areas at the very edges of their bodies.

Except mine. I was almost totally blue, the only red areas were my trunk and the middle of my face. Pretty much most of my extremities showed cooler.

 

It was kind of shocking! There on the screen you could see the actual results of Raynaud's. Mind you, I was not having an attack, nor was I particularly chilled at the moment. It was just the poor circulation in my body.

 

Freaky. Just thought I'd share that!

 

Mary


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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I'd like to know this also. My feet will go bluish but not white and they're normally red because of the erythromelalgia. My fingers go white but never blue and again are usually red for the same reason as my feet. My Raynauds was diagnosed same time as the sclero.

 

When in my twenties I was always cold particularly my hands but now in my forties and despite Raynauds I am more often hot than cold despite living in a cold climate. Go figure!


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I mostly have fingers that turn sheet white and burn and then turn red when warming back up. My feet turn red straight away and my ears go burning red as soon as any cool air hits them.

 

Jill

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Hi Snowbird,

 

As I understand it, there are many different varieties of Raynaud's. The requirement for diagnosis is that finger(s) or toe(s) turn white or blue in response to stress or cold.

 

The waxy, dead white indicates a complete vasospasm, where no blood at all gets through. The blue indicates that there is some circulation, but not much. The red phase -- which, by the way, many of us do not ever experience -- is due to the blood suddenly rushing back in when the vasospasm ends.

 

All of my toes turn a very dark, dusky blue/purple at once. If they ever turn white, I haven't noticed it. My fingers however turn dead white -- either one finger or a combination of fingers, on either one hand or both hands. I haven't yet caught them all turning white at the same time, although the seemingly unaffected fingers are also very cold to the touch.

 

I haven't experienced the red phase. Best I can figure, some of us rewarm too slowly to enjoy that bonus color! But, red all by itself does not constitute Raynaud's; it must be combined with either white and/or blue to qualify. See our pages on Raynaud's which include many additional tidbits...Raynaud's of the nipples, anyone? Yeowch.


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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I'm like Amanda in that I also have erythromelalgia which makes my feet & hands go bright red & very swollen, they also feel as if they're burning. I just never seem to get the balance right. I think the Raynaud's is the worst for me and like you Shelley sometimes it's "either one finger or a combination of fingers, on either one hand or both hands". I have had times when both hands have gone fully white from the wrists down to my finger tips when I find that I can't do anything useful with my hands until they've recovered, they tend to be totally numb during this white stage, does anyone else experience this?

 

Jensue

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My fingers, knuckles and toes are blue/purple and cold to the touch 80% of the time. Even in hot weather.

 

Sometimes I get blotches of the blue/purple, like upper index fingers middle pinkies and index knuckles......very odd looking.


Diffuse Scleroderma Diagnosed March 2009

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Wow everybody....this has been an enlightening conversation topic for me....so many variations....and Shelley, ouch it would be!! I find it really interesting that even the hot weather causes this to happen...I would have never guessed that...always assumed it had to be cold/damp.

 

Mary, that was an interesting read to say the least...and I'de have to agree with you on freaky...but I'de still be curious enough to check it out at a science museum too now that you've mentioned it....

 

Thanks everyone!


Sending good wishes your way!

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Yesterday at lunch my husband noticed my fingers were blue. Of course his usual comment "How can your hands be cold in the middle of summer?" He checked and the temperature in the house was 75 degrees. I was wearing fleece so my body was quite warm but yet my hands were still cold to the touch as well as the Raynaud's purple finger tips.

 

So just for fun I got out our thermometer. We have the infrared type where you can get the temperature by just scanning the surface. We tested at my forehead and it was 97.5 degrees. We tested my fingers and they were 77 degrees! As we moved up my arm my temperature increased. So I guess it has to be really, really warm for those little blood vessels in the fingers to stay open enough to allow for adequate circulation.

 

We're all just a big science experiment!

 

Big Hugs to you all,


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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