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enjoytheride

Had my parathyroidectomy

7 posts in this topic

I wonder if I really have Raynaud's sometimes. I have a problem with my left hand some but really have severe cold in my nose and mouth. Unlike the hand it really hurts- sort of like being stuck in a brain freeze.

 

When I had the surgery, I remember one of those semi-with-it moments in recovery, with my saying to someone I need heat pack for my face, the doctor patting my shoulder and saying "You're OK," and my responding "No I'm not."

 

I must have made myself understood because when I finally arrived to consistent awareness, I had a stack of chemical heat packs next to me and one on my face.

 

Boy those things are great- you sort of squash it and it gets warm for a long time. I have to get some of those. It doesn't seem to drive away the Raynaud's but it does ease the brain freeze part.

 

If I every have to have surgery again, I think I will have the discussion BEFORE I'm not mentally competent.

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I love those heat pads. I used them all the time in my hands, in my gloves, in my socks, pretty much wherever I can put them. I also use the ones that have adhesive that you can get in the pharmacies and stick them to my back, tummy, chest. It helps.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Sorry about that, but now I have a question, or not. Anyhow, I feel cold in my legs and hands and I live in Miami (hot). Is this part of the scleroderma?

 

Hugs,

 

Patty

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I can't speak for everyone but my Raynaud's is a sudden thing. One minute I'm okay, the next I feel like I'm in a freezer- at least parts of me. But it doesn't seem to cause general coldness.

 

For many years, I would get cold all over and find that I had to take a hot shower to get myself warm again, even if the temperature was decent. It was sort of like whatever system it is that increases circulation didn't work on its own.

 

Then I was told my vitamin D levels were very low and was given large amount of supplement to bring it up. I then found that my getting stuck in cold mode was fixed. Although I didn't get that "can't get warm again" thing, it didn't cure the Raynaud's though.

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Hello Patty

 

The majority of people with scleroderma also have Raynaud's. Some like myself have it mildly other more severe.

 

Take care and keep posting.


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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Patty, you could be standing at a register or else where in a store and the ventilation system will come on. The flow of air crossing your neck, face or arms can bring on an attack. I get cold spells in my hands and or legs. I can't seem to get them warmed up. I can be warm everywhere else. I do get the internal shakes at times like I am chilled but I may not really feel like I am cold but my insides appear to be cold. I can get cold on a 80 degree day. When it happens it just happens and you hope it goes away quickly. Sometimes it takes a many hours and several methods to warm you up, from the inside out. Keep asking questions. Yes this can be caused by Scleroderma or Thyroid malfunctioning, Raynauds, and other things. Miscommunication with system functions can bring on all sorts of strange issues we get to deal with.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Last weekend I had an attack that lasted 2 hours. I even had heat packs on my hands and simply could not get them to warm up. I have found that I am way more at risk if I am at all tired or fatigued. I am also at higher risk of what my doctor calls "autonomic dysregulation" or the shaking that Sheryl mentioned. I really hate it when that happens. I find that a heating pad or warm blankets out of the dryer are the best approach to dealing with those. When I am out in the wilderness (which I am frequently) my strategy is to keep warm fluids on hand and lots of those heat packs. I have also had success with warming digits by burying them under my husbands shirt on his belly. What a nice guy he is to let me put ice cold hands on his warm skin. I also have pretty significant sensitivity to cold on my nose and mouth. I have found that wearing a neck gaiter that I can pull up over my head and around my face tends to keep things a little warmer. I may look a bit like a geek, but at least I am a warm geek (and happy).

 

 

Jill

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