living with scleroderma and raynaud

[lindacamp]

i got scleroderma and raynaud's .i have had 2 amputation in the last 9 months.trying to find mittens to keep my hand warm

[pino99]

Hi,

Really sorry about your amputations. I had one on my right index finger and that was bad enough. I use thick fleece mittens with charcoal disposable heating pads inside, they work wonders. Are you on any medication to help? I take losartan and aspirin. After the amputation I developed ulcers in other fingers and it looked like they were headed the same way. My rheumy put me on sildenafil (I asked for it, she had to consult others, but actually NICE recomends it now as the first treatment, before illoprost), that cleared all the ulcers within a couple of weeks. I took it for a couple of months and then stopped and have not had any further problems.

Take care,

Pino

[Serendipity16]

I have these cotswoldoutdoor.com/p/extre... for regular cold wear. They were recommended to me by someone else with Raynauds. They help but still sometimes cold/ numb. I have fleece-lined mittens, possibly sheepskin?, that are warmer but harder to do anything in. I was given these as a present around 18 years ago so not too sure where from.

[hunkyd0ry]

Hi,

Blimey, that sounds rather serious! :-\

I was only diagnosed in July, although I've been dealing with the symptoms of Scleroderma for just about a year. Strangely enough what I experienced during the coldest months Dec - Feb last winter was the normal Raynauds symptoms of white & numb fingers and toes.

Although I had always hated UGG boots, but I was finally converted to a fan, as they really saved me! Needless to say I have now some sheetskin mittens too. And although not particularly practical, they are amazing and let me enjoy the outdoors again. I would definitely recommend it!

I would love to hear more about your story to be honest! How long have you been dealing with this? And why the amputations?

Dory

[tall-tim]

I have not had amputations but I wear tubular bandages on my wrists all year round, plus oatmeal-coloured wool & silver thread gloves and mittens from the Scleroderma Association as needed, plus waterproof ski mittens over these as needed. Most ski mittens have individual fingers so it was a bit of a palaver finding ones which you could take the gloves out of - the ones I have are called 'Trespass Ski Mittens' bought from eBay. I also have pocket warmers in reserve if needed, the reusable sort you click and they heat up themselves.

Hope this info helps!

Tim

[kimmo in reply to tall-tim]

Can I ask why the tubular bandages? What advantages do they give? My raynauds is so severe, I have peripheral shutdown daily.

[tall-tim]

Sounds miserable for you. My bandages are the slightly stretchy, tubular ones. They provide a discrete extra layer to my wrists, helping insulation. They don't interfere with gloves or mittens I wear nor the cuffs of my clothing. People don't seem to notice them. The ones I buy are no particular specification; at the moment I have Morrison's. You can open the packets before buying and check which size suits your wrist. I cut them to lengths of 7".

[hunkyd0ry]

Hi lindacamp. Why did you have to have amputations? Was there no way they could get your fingers under control in any way?

I am fairly new to this but do seem to be a bit of a severe case myself - the prospect of amputation freaks me out a bit.