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#1 jodip

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Posted 15 April 2013 - 02:55 AM

Hi! I'm new to the CREST diagnosis (with HIGH positive ACA bloodwork). Still waiting to get into a rheumatologist, but I am so frustrated with my symptoms and hate being uncomfortable and in pain. It started with these weird red spots on the tips on my toes that HURT but would go away, then flare up in other spots. I still have those, now I am having finger troubles, too, with pain/heat (but not blue like Raynaud's) and swelling. Looking for some support from people that understand. :)

#2 Shelley Ensz

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Posted 15 April 2013 - 11:56 AM

Hi Jodip,

 

Welcome to Sclero Forums!  I'm sorry you have scleroderma, but you have come to the right place for the highest quality information and support to help you deal with it best.

 

Did the doctor say what the spots on your toes are called, or what your hand issues are?  From your very brief description, it sounds a tiny bit more like chilblains (or pernio) than Raynaud's, however people with Raynaud's can be more prone to chilblains, so they are not mutually exclusive.

 

Also, please keep in mind that I may be wrong -- I often am!! -- and I have yet to pass a single exam for my Internet Medical Degree (IMD) <sigh>.

 

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Shelley Ensz
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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.

#3 jodip

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Posted 15 April 2013 - 04:30 PM

Thanks for the warm welcome!

My initial diagnosis came from my dermatologist, who ran my bloodwork after seeing my toes. She told me it was vasculitis, that I had these inflamed blood vessels in my toe tips. I was given clobetasol cream to help with the pain.

The burning and redness in my fingers and toes after stress/cold seems to affect the whole digit and not just in patches. I read somewhere that it might just be mild Raynaud's (since I never see the blue) the beginning of it starting to get worse.

It's hard not having answers when I keep coming up with more and more questions!

#4 Joelf

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Posted 15 April 2013 - 10:31 PM

Hi Jodip,

 

Welcome to these forums!

 

Sorry to hear that you're suffering with vasculitis; it must be very unpleasant and worrying for you. Unfortunately, Scleroderma is a very complex disease, not least because it manifests itself and affects every sufferer in lots of different ways and I can really empathise with the pain and frustration that you feel.

 

We do recommend that if possible our members consult a Scleroderma specialist as sadly many rheumatologists do not have the knowledge and expertise to deal with this challenging disease.

 

Our medical pages are full of current, reliable information to help you understand Scleroderma and all it's little idiosyncrasies!

 

Kind regards,


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#5 Sweet

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Posted 16 April 2013 - 10:41 AM

Hi Jodip,

Welcome to Sclero Forums! I'm sorry you have scleroderma, but I'm so happy you've found us. You've come to the right place for understanding, accurate information and support. I look forward to knowing you better!
Warm and gentle hugs,

Pamela
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#6 Shelley Ensz

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Posted 25 April 2013 - 12:51 PM

Hi Jodip,

 

Please keep in mind that I have ordered my Internet Medical Degree for $5 but I have not received it yet, so I am STILL practicing without a license. So you should verify everything I say with a reliable medical source. Like your doctor, for example.

 

Just FYI, Raynaud's does not always appear with the blue phase (or even the red phase).  It is the white phase that is actually the most indicative of it.  That's because when the affected part is a dead, waxy white, there is no circulation at all, because the vasospasm has temporarily completely stopped the blood flow to the affected part.

 

I know this is beyond gross (warning: very sensitive people, please do not read this post any further) but I think the most accurate depiction of a Raynaud's attack is the way the hands of a corpse looks, because there is no circulation at all, and that's how my fingers look in the worst attacks.

 

When our fingers (or toes) are dusky blue or dark purplish, that's because a little bit of blood is still getting through, despite the vasospasm.  And the red phase occurs in some people upon rewarming.  My fingers and toes seem to skip the red phase almost all the time, but if I rewarm them quickly (like under warm water) then they are more likely to go red for a spell.

 

The diagnostic question for Raynaud's is, "Do your fingers or toes ever turn white or blue in response to cold or stress?"  You'll note that it is "or blue", not "and blue". And even the white phase is optional.  It represents the worst phase but "just blue" counts as well when it comes to diagnosis. And the red (rewarming) phase isn't even mentioned.

 

Now, given that particular explanation, would you say you have Raynaud's....or not?

 

:emoticons-group-hug:


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.