Anyone here with Raynaud's?

My doc thinks I may have it and I think so too.  He said to take niacin.

How do you manage yours?  I'm so sick of being cold, and sometimes I notice my fingers turn white. I was starting to cook and noticed one of my fingers turned white for a while.    My toes turn white, fingers turn white especially when I get into the tub. 

I do...and I'm always cold and my nails turn blue very easily.  I don't take anything for it, but I do crank up the heat and take long hot showers when I'm really, really cold.   

I think yes!!!   Never had it before surgery, but over the past few months have the whole finger turning white thing..seems to happen randomly.    Might be time for some niacin!

It hurts being cold.. feels like cold air is trying to pierce thru the skin to my bones...   office is always cold.  I try to layer up. 

 They believe i have had it since i was little. I have always been cold really easily and my fingers and toes turn blue fast! once while in the hospital they freaked out b/c i was so blue in my tips they thought i was losing oxygen. I was told there was nothing I could do with it. I just needed to deal with it. I am going to ask my new doctor what she thinks since it seems to be getting worse. It's to the point where if i grab the milk my hands hurt and are so cold even putting my hand in raw turkey meat they feel like they are frozen icslcle sp*

Niacin? Hrm. That's a new one to me.

I was conditionally-diagnosed (ie "come back when you turn blue..") a few years ago. Surprise, I got to go back this past September. I was full-on Smurf, and for no good reason. I don't go waxy-white like standard Raynaud's, and some other things are off.. but it's enough I've been given the dx of "idiopathic Raynaud's" and boy is it *fun*.

The standard treatment is calcium channel blockers. And for us, that's 3x a day of the usual one - Nifedipine. And I hated it. Niacin can give you an evil flush all over your body - Nifedipine gave it to me just on my shins, and made them swell up. And didn't help.

I'm on a new med to try and help - a beta-blocker. We'll see. I take it 2x a day.

Be sure you're being seen by a rheumatologist. They are the ones to see you. The best management is to avoid triggers. If you do turn white, warm the area slowly (although, the bath setting you off doesn't count). And then try the different meds. I've heard some have to use nitroglycerine creams/gels on the skin if it gets bad enough.. I don't ever want to get that bad.

Welcome back - havent' seen you in a long time.

I used to take verapamil for both migraines and raynauds but postop, my BP and pulse got so low that I had to stop it. Thankfully, my raynauds is better than it used to be. Now it is just really bad in the winter when outside - my fingers and toes get painful and numb at the same time -never looked at the color. I have special glove and sock liners to try to keep my hands and feet warm but it still doesn't help.

I have had it since I am a little kid, I remember coming in crying from playing in the snow

Sorry I'm just now responding - the notification email hit my spam box?

Yeah. I stopped coming to OH for a number of reasons. I mostly hang out on FB. I really haven't been blogging much, either. I lost pretty much most of my motivation.

I used to wear my Vibrams all winter long.. as long as I wore my socks when it was super cold. This winter, though, I've had to switch to my Chucks more and more, which is a bit depressing to me as it's a shift for me. It's just not cool. And while I've been used to needing the hot baths to warm up, the absolute blue I turned in NOLA last September was a bit.. shocking. A few times, other people have noted it in passing ("it's odd that you're sitting there and your toes are gray..." "you realize that we're walking around and your hands are blue.. right?") but for the most part, I just notice that they are really, really cold and are slow to pink-up.

Fun times.

sorry you are having so much trouble.

I too stopped coming here for quite some time but I started back about a month ago.  I hear many people say they are on facebook -where on face book?

Funny you said that as My Doc has brought it up to me twice now and this all post DS surgery.

huh