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Amanda Thorpe

Explain a Raynaud's attack...how it feels...

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Hey, there everybody with Raynaud's, which is most of you, could you please detail an attack for me? I'm interested in what it feels like, how painful is it, what is the pain like, is it a burning sensation or pins and needles etc, how long does it last and anything else relevant to how it feels. I'm not interested in what sparks it off, I know all that but what I don't know (I think) is what it feels like.

 

If you're wondering why I'm asking, I'm trying to determine whether the pins and needles (think of the sensation being inflicted with knitting needles rather than little needles!) I am now getting in my feet is from Raynaud's. Although I have Raynaud's I have never had colour changes and for a long time cramp was the worse symptom of it. Then the foot ulcers started, nevertheless, for years I was told that the blood flow in my feet was good and that the ulcers were a result of the skin breaking down. I now know that blood flow is the cause of the ulcers (DUH!) which I would attribute to Raynaud's although I guess scleroderma could also be the culprit...hmm...

 

Although I have only just started to feel the pins and needles it could have been there for years, a change in medication now means I feel more than before, so I can't determine how long I have actually had pins and needles in my feet. What I can tell you is it begins when I move my legs from a horizontal position (lying on the bed or sitting with them propped up, level to my hips) to a verticle-ish one (kneeling or sitting in my wheelchair). As soon as I lower my feet I can feel the pins and needles begin and of course the longer my feet are lower than my hips, the worse it gets. Lying down is the best remedy, usually taking anywhere from 10 to 30 minutes to bring relief, however, if my legs have been verticle to long, it can go on for hours.

 

I see my rheumatologist shortly but I wanted some thoughts from you guys in the meantime so, what'd'ya think?

 

Thanks and take care.


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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Hi Amanda,

 

That's a very interesting question. And frankly I'm not quite sure how to answer it, either. I mean, I suppose there's two answers, one being a specific person's experience with pins and needles, and another being what sort of attack in general would be considered to be related to Raynaud's, or not.

 

I do get pins and needles with some, but not all, Raynaud's attacks. Usually it is when the blood flow is restoring itself, and typically that is rather brief. And I'm aware that it was an attack so I'm doing something to rewarm at the time.

 

If I was experiencing something more prolonged than a few minutes (or so) of a specific attack, or more widespread than just my hands or feet, why, then I'd be concerned that maybe something more is going on, and seek the advice of a scleroderma expert.

 

Also, I'd be concerned that this appears to be positional, rather than cold/stress induced, like Raynaud's.  So, between being so prolonged, and positional, if it were me, I wouldn't very quickly or easily accept Raynaud's as being the entire answer.

 

But of course, I'm not a doctor, and my First Aid Certificate has lapsed, and even my First Aid Kit needs refreshing! 

 

Please let us know what you find out, won't you?  In short, I think you're very right to at least question this, and to press for more comprehensive answers.

 

:hug-group:


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 Amanda,

 

Sorry to hear you're having more unpleasant symptoms.

 

I've not had many Raynaud's attacks in my feet, although I do get it fairly frequently in my hands, particularly in supermarkets! I do get pins and needles, but mostly when the blood starts to return to my fingers.

 

I would describe the pain in my hands as a tingling ache (and of course they do go very white), so I know when I'm having an attack.

 

Like Shelley has suggested, it's a little odd that the pins and needles are worse when your legs are in a lower position, which does make you wonder if it is "simply" Raynaud's or something to do with the blood flow to your legs.

 

Definitely something to investigate with your rheumatologist when you see him!

 

Best wishes,


Jo Frowde

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