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Vanessa

Newly diagnosed and still stunned

21 posts in this topic

Hi Vanessa,

 

Another big welcome to our very large, yet awesome "Family"!

We are a community of folks who care, offer support and share experiences with one another.

 

We are like snow flakes, in that none of us is exactly the same, with regard to our illnesses.

Yet, it is very comforting to know that there are those of us who really do understand...that there

are others who are going through some of the same things!

 

So, please share and post often...you need not go through this feeling as though you are alone with this!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi!

 

I have absolutely NO experience with Raynaud's in the nose, so I have no idea if something like this would help, but is there something you can apply to the outside skin that will bring out heat (I'm thinking things like muscle rubs that stimluate the skin to make heat)? I'm just trying to think if there are options that avoid having to cover up so much.

 

Anyways, I probably don't know what I'm talking about... :unsure:

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Hi Vanessa. :)

 

A warm welcome to you from another English fellow sufferer; unfortunately although I also have Raynaud's thankfully it's never actually affected my nose (or not to the effect it has on my fingers) so I can't offer you any more advice other than the very helpful tips given by the other members. However I do find that the Raynaud's is worse when my whole body temperature is low as opposed to just my hands being cold so although I'm quite a chilly mortal I try not to let myself get too cold.......not easy with our wet, windy climate!! ;)

 

I have had excellent treatment from both The Royal Free Hospital & The Royal Brompton Hospital (for my lung involvement) so I'm sure when you get your appointment wth The Royal Free you won't be disappointed!! :D

 

Kind regards x


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Welcome to the sclero family, Vanessa

 

I know how you feel coping with feelings after diagnosis, Im still in a bit of a headspin after 10 months, but its getting better.

 

Id just like to say that I totally LOVE Susie's very apt description that we are all 'like snowflakes' with our many differences in our shared condition.

 

I also have a nose like an ice cube, even in summer, and havent found a solution. I can't even attempt to warm my nose with my frozen, stiff fingers. Im not liking the weather getting colder by the day now.

 

Warm hugs to everyone

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Vanessa,

today I went out for a long walk and did not take my balaclava because it was too warm to cover up everything. So I tried to use my neck gaiter to just cover my nose. It did not work so well. So now I am going to get a nose protector that mountaineers use when on glaciers to prevent their nose from being fried by the sun. It is a simple device that is held in place by glasses. You can get one at any mountaineering shop or you can google nose protection and go to any mountaineering site. I will try it out and report back. These sunny, crisp days are just too good to be held captive inside.

 

Jill

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