Dee L

Raynauds (ucers and heated gloves) & Guernsey

6 posts in this topic

Hi everyone

 

I hope you have been coping with the recent 'colder climate'.

 

I was diagnosed with systemic scleroderma in November 2008 and I have problems with my gut and bowel which I am learning to live with. However, the reason for writing today is my Raynauds. I have been finding it difficult keeping my hands warm despite wearing gloves most of the time (sometimes in the house) and now my fingers are becoming damaged and sore, the tips on a couple of my fingers are becoming puckered and there is a break in the skin. I imagine this is the start of an ulcer and from what I read, these can be difficult to manage!

 

Any recommendations on which gloves to use? I use disposible hand warmers and have a second pair of battery-heated gloves on order, the first of which didn't seem to have any heat at all! I think we are fortunate living in the UK that we only have to deal with this for a couple of months of the year unlike some countries (except Scotland of course who have had a particularly hard winter!)

 

Also, can anyone offer advice on how to look after the skin once it gets to my stage -I have read a leaftlet which suggests keeping warm and moisturise.

 

Finally, is there anyone else from Guernsey? I only know one other person on the Island who has Scleroderma.

 

Keep warm, spring is one the way!

 

Dee

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Hi Dee,

 

Warmth and moisturizing are what most of us rely on. I really think we should get group discounts on gloves and lotions!

 

Have you tried wearing a couple of layers of gloves? A thin pair of 'glove liners' under a heavier pair seems to work better than one really thick pair. I try to start gloving up before my hands actually get cold because once they are cold, putting the gloves on just seems to keep the cold in. I've had good luck with mittens that have pockets for those little grain bags that you heat up in the microwave and also with wrist warmers. I've also bought several pair of really heavy rubber gloves at the home improvement center, the kind used for stripping paint, because they are more insulating when washing vegetables, etc.

 

My doctor likes really heavy petroleum jelly-type balms at night and a very thick lotion for the daytime. I keep my lotion on the heat vent by the sink so it's always slightly warm. (Silly me, I didn't buy a lotion warmer thingy when they were on sale during the holidays. I hope they have them next year. . .)

 

There are medications for Raynaud's and if you are starting to get digital ulcers, it might be a good idea to ask your doctor about them.

 

The closest I ever came to Guernsey was knitting an authentic Channel Islands gansey, unfortunately! Friends were married there and it looked lovely. Here in the American Rockies it is still winter and is snowing outside as I type this. Here's hoping for Spring for all of us.

 

Warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hello Dee

 

Welcome to the forum! Although I have Raynaud's it's not severe having said that my hands seem to get colder every year!

 

If you think you are developing an ulcer I would suggest you see your general practitioner or rheumatologist sooner rather than later. As Jeannie has said there are medications to help lessen Raynaud's attacks that you might want to discuss with your general practitioner/rheumatologist.

 

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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Hi Dee

 

Welcome to this friendly and informative forum. :bye:

 

I have Systemic Sclero and suffer with Raynaud's; I find it tends to be worse if I let my actual body temperature get too cold, not just my hands. Thankfully I haven't got the gut and bowel involvement you're suffering with (touch wood!! ;) )

 

Sadly I've never been to Guernsey although it looks a lovely island and I'd love to visit it. I did know someone who moved there to work; we used to call him 'Bergerac' although it was Guernsey, not Jersey!! :lol:


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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Thanks Amanda, Jeannie and Joelf for your replies and good advice.

 

I have just posted an order for some 'silver' gloves which I will use as glove liners. I also swallowed my pride and asked my general practitioner for a big tub of balm with pump on prescription because I used tonnes of it and it was costing me the earth. :blink:

 

The heated gloves still haven't arrived! Surely spring and the warmer climate will arrive first!

 

Thanks to your advice, I now feel confident that I should go to my general practitioner about my impending possible ulcer although the skin seems to be healing again (great news) but at least she could advise me for next time.

 

Take care and keep warm

Dee

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Hi there

 

Whilst my Raynauds is managable I have to take daily precautions and my best friend is my handwarmer which is produced by a famous lighter maker. I fill it with fuel every morning and carry it in my pocket. It stays warm all day and a can of fuel lasts for quite a long time.

Also I find skiing mitts better than gloves and for getting in to the car when its cold one of those microwaveable grain filled affairs. I actually have 2. One is shaped like a hot water bottle and the other long and slim to wrap round achey shoulders. Only disadvantage is they have a seriously weird pong and can't be washed so soon look a bit grubby.

I wish I had a heated steering wheel but then we can't have everything we wish for.

Having said that I used to wish I had tighter facial skin and now I wish I hadn't!

 

Vanessa

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