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Biomarker for Diffuse Scleroderma skin has been discovered!


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Raynaud's


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#1 Snowbird

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Posted 13 June 2009 - 09:17 AM

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!

#2 MaryFanPhilly

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Posted 13 June 2009 - 12:16 PM

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

#3 Sheryl

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Posted 13 June 2009 - 01:32 PM

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

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#4 Snowbird

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Posted 14 June 2009 - 01:59 AM

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!

#5 Jeannie McClelland

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Posted 14 June 2009 - 03:58 AM

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:
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#6 Buttons

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Posted 14 June 2009 - 04:47 AM

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

#7 lizzie

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Posted 14 June 2009 - 05:19 AM

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

#8 Cheryle

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Posted 14 June 2009 - 06:48 AM

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

#9 ozzy69

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Posted 14 June 2009 - 07:08 AM

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

#10 purplelibrarian

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Posted 14 June 2009 - 07:15 AM

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

#11 epasen

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Posted 14 June 2009 - 09:57 AM

Hi all,

My fingers normally turn just white, maybe all, maybe just one or maybe two or three. Then they usually go red when they're getting warm again. Once I've seen them turn almost black as well. That was kinda scary.

Hugs,
Emmi

#12 Deb1million

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Posted 14 June 2009 - 03:56 PM

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

#13 omaeva

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Posted 14 June 2009 - 05:22 PM

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!

#14 Buttons

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Posted 14 June 2009 - 09:18 PM

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

#15 MaryFanPhilly

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Posted 15 June 2009 - 01:43 AM

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

#16 Amanda Thorpe

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Posted 15 June 2009 - 03:42 AM

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!
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#17 jillatk

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Posted 15 June 2009 - 08:59 AM

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

#18 Shelley Ensz

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Posted 16 June 2009 - 12:06 PM

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.
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#19 Buttons

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Posted 17 June 2009 - 02:30 AM

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

#20 Kathy D

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Posted 17 June 2009 - 09:48 AM

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