Raynauds

[cmclien]

So is there a test for raynaud's?  Also, its not autoimmune right? tho I read people often have it who have SJS, I wonder why that is.

I'm pretty sure I have it.  My toes often turn blue tho it doesn't hurt.  But in the winter I get these what I call attacks where my feet are so cold and then they do hurt and there is nothing I can do to warm them.  I put heating pads on them and you can still feel the cold through my socks.  Usually I resort to drinking a glass or two of wine which gets me out of the attack as alcohol opens the blood vessels.

Sometimes I go to bed with socks on because my feet are so cold and I can't sleep because they hurt.  Then I wake up a few hours later sweating because they are so hot.

Is this something I should talk to my rheumy about?  will the plaquenil help as I've read it makes you perspire more, not sure if thats true.
Cindi

[gurs]

wow-does drinking wine open up the blood vessels? i need to drink a case then!!! ha ha

[cmclien]

ha ha!

It really does help though.  The problem is it makes me congested and then I take a sudafed which I read can prompt the raynaud's syndrome thing.  So I'm a bit in a vicious cycle 

Even with the sudafed though, I find the wine always works after a glass or two and then I feel pretty good too!

[Gerty]

I also think I might have Raynaud's not DXed yet but I'm seeing Dr today about something diff but hoping to take my photos to show him if you can take photos of your feet that just might be of some help to your Dr my hands are my big worries but also have the feet and toes my toes are numb all the time but from time to time my toes go so numb its very hard to walk at the time's I feel my toes this numb If I take of my shoe and sock my sole of my feet are really white and purple and so is the top

and bottom of my big toe and the bottoms of other toes my toes are so cold when they are so white like this and very numb if I touch my toes they feel like Ive just been in the freezer but my feet feel warm there is nothing I can do to warm them up even just been in an car or a aircon building can set them off and that is with shoes and socks on as well. Very odd anyway if you want have a look at my post if you have not already seen Ive got some pics of my hands there with diff colours from white to black. my hands don't go white white like my toes and soles of my feet do.  and that is the reason I'm not sure cause from what Ive read fingers seem to go white white like my toes do but my fingers or hands don't get that white.
https://sjogrensworld.org/index.php?topic=13008.0

[inga]

Raynaud's occurs in a lot of autoimmune diseases.  Altho the process is not autoimmune, the etiology may be.

[DragonflyC]

Here's info about testing for Raynaud's: http://www.nhlbi.nih.gov/health/dci/Diseases/raynaud/ray_diagnosis.html

My rheum used the nailfold capillaroscopy procedure to diagnose mine.  He said that the type of damage he saw let him know that my Raynaud's was related to autoimmune issues.

Most people use coping strategies rather than meds to deal with Raynaud's.

If you want more ideas, the coping section of the Raynaud's Association message boards has some good ones (http://www.raynauds.org/support/forums/forum/categories.cfm?catid=4&zb=42618).  It's not as active a board as this one, though, so you might not get many responses if you post a new thread.  I've found searching older threads most helpful.

[DragonflyC]

I just came across these notes from the Raynaud's Education & Support Day this past July and thought some of you might be interested:
http://www.raynauds.org/index.php/2010/08/first-raynauds-educationsupport-day-elicits-exchange-of-information-ideas/

[cmclien]

Thanks so much, I looked through these links.  I guess I'll bring it up when I see my rheumy this week.

Cindi

[Prairie Gal]

Cindi, I have Raynaud's (Dx 3 years after SjS) and in cool weather wear socks to bed, plus gloves with half fingers in the office on cool winter mornings so I can use the computer keyboard comfortably.   My fingers hurt more than my toes, but my toes sometimes wake me up in the night -- not too often, though.  My feet do get too hot in bed at times, too, so I have to pull off the socks.  I use potholders when getting something out of the freezer otherwise my fingers hurt.

I've never tried alcohol!   Since caffeine and alcohol are dehydrating, I indulge only occasionally.  I know that Sudafed dries me out too much; haven't taken any since the SjS Dx.   

[puccini914]

I wanted to show my doc my Raynauds so I just put my hands, which were red hot and swollen, under the freezing cold running tap water, and poof!   They turned white right away, then  even a little blue.  There you go.  All the nurses were poping their heads heads in, everyone thought it was cool.  This was of course before these chages became so incredbly painful, now I dread everytime I have to wash my hands and let the water warm up first.

[Gerty]

I also think I might have Raynaud's not DXed yet but I'm seeing Dr today about something diff but hoping to take my photos to show him if you can take photos of your feet that just might be of some help to your Dr my hands are my big worries but also have the feet and toes my toes are numb all the time but from time to time my toes go so numb its very hard to walk at the time's I feel my toes this numb If I take of my shoe and sock my sole of my feet are really white and purple and so is the top

and bottom of my big toe and the bottoms of other toes my toes are so cold when they are so white like this and very numb if I touch my toes they feel like Ive just been in the freezer but my feet feel warm there is nothing I can do to warm them up even just been in an car or a aircon building can set them off and that is with shoes and socks on as well. Very odd anyway if you want have a look at my post if you have not already seen Ive got some pics of my hands there with diff colours from white to black. my hands don't go white white like my toes and soles of my feet do.  and that is the reason I'm not sure cause from what Ive read fingers seem to go white white like my toes do but my fingers or hands don't get that white.
https://sjogrensworld.org/index.php?topic=13008.0

since I have made this post I have since been DXed when my hands get warm they tend to get a burning sensation could somebody please tell me this will happen in summer time we have just started spring the burning in warm thing I mean

[gurs]

Is anyone on HRT and noticed their Raynaud's worsening? My raynauds is horrible, and im wondering if my low dose estrogen is causing this. I read
where it can make raynaud's worse? though, estrogen is supposed to help with blood flow? I just dont get it?

Gursie