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RowdyBliss 11-03-2009 05:05 PM

PWS folks - cold all the time??
Hi folks!

I'm going to my primary doc soon to start figuring out treatment, etc. for my PWS - and to see if there are any more serious underlying issues (like KTS). I want to be as thorough as possible with my medical history with my primary doctor, as my former primary has just been thrown into jail for fraud and my medical records are floating around in the ether somewhere. I'm sure I'll be able to track them down, but it could take weeks, maybe months, and my appointment is on 11/19.

One of the things that I've always been curious about is that I am ALWAYS cold! Like, always. Even as I type this, I am sitting in my cubicle and the thermometer that I keep here says it's roughly 70 degrees - and I am bundled up with my wool coat and scarf. If I could wear gloves, I totally would (seriously considering fingerless gloves). No, I'm not getting sick; this is normal for me. Even the tip of my nose is cold. Sometimes, my feet get so cold that they hurt - and my PWS turns a scary dark blue, especially where it covers my toes.

Someone once told me that I probably have Reynaud's syndrome - which is a condition associated with vascular issues - but I don't have a diagnosis... yet.

Do any of you PWSers get cold all the time, or am I a rare lucky one? ;) Just curious more than anything, I guess, and wondering if it's even worth mentioning to my doctor.

kaykay 11-04-2009 01:45 AM

you should mention it to your doctor.

i have a facial birthmark. does not feel cold all the time. I can feel it pulsing sometimes but not cold but my mother tells me it gets darker when i am cold.

wish i felt cold. i love the cold ! arthritis doesn't thought

RowdyBliss 11-04-2009 03:38 PM

My birthmark isn't cold - it's actually warm to the touch, a lot. It's the REST of me that gets cold - and I have to wonder if maybe I'm losing body heat through the birthmark, or maybe it's because my circulation is compromised because of something else (KT?).

Anyway, it's flippin' annoying to be so cold all the time. Maybe I should move to the tropics, eh? For medical reasons?? :D

missy 11-04-2009 11:39 PM

When my thyroid was underactive, I was just like that! I could NOT get warm. It could be totally unrelated... it's something to mention to your doc.


kaykay 11-05-2009 04:05 AM

oh sorry.

Nope. don't feel cold. and moving to the tropics is not an answer ! whole new problem. sorry. ha ha ha ha.

kgregory 03-22-2010 12:28 AM

I don't feel constantly cold, but my PWS is on my face, so I'm not sure if it has anything to do with that.

city_kid1975 11-28-2015 08:01 PM

Always Cold
I'm always cold as well. My PWS is on my entire left arm from finger tips to past my shoulder and part of my chest and back. When I am warm it is bright. When I start to get cold it turns a blue purple and as I continue to get cold it gets to a deep blue/purple. At that point my fingertips lose their feeling and go numb. I bundle all year long, love 100+ temps. Now it's getting cold and I'm sitting with a space heater at my feet, sweats and compression shirt under my long sleeve shirt and sweat shirt. Gloves...I have so many. Its rediculous.

My primary care doc said it's due to my capillaries being so close to the outer layer of skin. I got a second opinion from another doc she said the same thing. And I went to a dermatologist and was told the exact same thing.

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