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marsha

Hard time with Raynauds

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I will pet the kitties Sweet, Amanda I will be working from home from now on I am not sure if I am totally happy with this.. I think I am going to miss the company! I think It's going to be a looong winter here in Northern Maine, We already have had 2 feet of snow!!! It was kinda warm today 40's so some was melting but it is supposed to turn off really really cold below zero on Monday :( UGH~~ Keep warm and happy holidays to everyone

Marsha

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I have discovered the hand warmers Sweet mentioned! These are advertised mostly for hunters or those that work outside but they are great for Raynaud's. My husband gave me some as a gift after I saw Sweet's post and said I'd really like some. They are these amazing little packets you shake and put in your gloves for warmth, they also have ones for the feet.

 

Yesterday I was on the beach with my gloves and my hands got so cold I had to leave, they were white and blue as they warmed up they hurt so badly. Today I used the hand warmers and they were great. The ones I have still are warm 8 hours later! They reactivate with a shake and I now have them on my neck because it is a little achy.

 

AgaIn, READ THE WARNINGS on the packets if you decide to try them. They do get hot and can burn, especially if you have sensitive skin. They should not be used in areas with open sores. You could layer them between two sets of gloves if you did have a problem.

 

Maybe these would help you, Marsha.

 

miocean


ISN Artist

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Marsha, I am sending lots of WARM hugs your way. Even at home I bet it is still a challenge trying to stay warm.

 

Miocean, how thoughtful of your husband to get you hand warmers. Perhaps I should mention that these are really hard if not impossible to find in normal stores, but they are readily available online and at hunting and sporting goods stores. If you buy them in bulk, they are under $1 (US) for a pair (two of them) and most of them last for a very long time (most of the day).

 

Yes, I agree, the hand warmers are really great. But I found out years ago that it is a good idea not to use them in your shoes or slippers; they can get too hot and if your feet are feeling that sort of frozen cold, it makes it hard or impossible to feel the burn, too.

 

I suppose we have to be similarly careful with hands, but most of us probably don't normally put shoes on our hands. :(

 

Anyway, if you are experiencing a temporary or permanent lack of sensitivity, be sure to be careful using them. I find they work best when I just keep them in my pockets. I can warm my hands up at any time and nobody is the wiser.

 

For that matter, I've paid a lot more attention to just having (or sewing) pockets in my clothes because just in themselves they are a wonderful anti-Raynaud's program.

 

Jeannie went on a sewing extravaganza and added warm pockets to all her old clothes. If you are a sewer, you can also use thermal materials for pocket linings, such as recycling an old pair of thermal underwear.

 

When I'm getting dressed I try to remember to consider the pocket situation so that I have pockets available either in my slacks or tops. It took me a long time to learn how to take anti-Raynaud's measures *before* an attack occurred. It is a zillion times easier to try to prevent an attack, than to try to recover from one. After awhile, you can learn your trouble-spots -- that always chilly restaurant, the frozen food aisle in the grocery store, even tense situations -- and take measures to keep warm before it's too late to avert an attack.

 

Some people with more advanced disease might find it impossible to completely prevent attacks, but really proactive measures to try to avert them should still help to reduce the frequency and intensity or duration of them. We should all consider medication for Raynaud's when we need it, as well. Sometimes it can be as simple as switching the type of blood pressure medication we take.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Actually it's interesting reading about everyone's experiences hand warmers.

 

My husband and I had a day out in London (busman's holiday for him ;) ) and we came across this lovely market on the South Bank. There was a fellow selling gel pads that heat up as hand warmers and I bought a couple, after regaling the poor chap with lots of information about Raynaud's and explaining all about how painful a condition it was. I can't quite remember exactly how it came about but he insisted on my trying one on my neck? where it was a little too hot (I can see how easy it would be to inadvertently burn yourself!! ^_^ )

 

Having used them inside my gloves they do seem to be quite effective as hand warmers, although I really wouldn't recommend using them on necks (or any other sensitive parts of the body!! :P :lol: )

 

Kind regards,


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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My husband bought my hand warmers in a big box store that sells home building supplies. Mine are a charcoal base, not a gel, and reactivate by shaking. This morning I tried to reactivate them but they were "done." They say the are environmentally friendly and you throw them out when done.

 

Another great thing I have seen lately but don't have is a scarf with pockets at the ends. It serves the double duty of keeping your neck and your hands warm. I know there are a group of knitters here, they might be interested in making them. I have found scarfs to be a great addition to my wardrobe, both in changing the way an outfit looks and keeping warm.

 

I've learned to check for pockets before I purchase sweatshirts and jackets to make sure they are big enough and open properly for sticking my hands in.

 

miocean


ISN Artist

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Hi Miocean,

 

Your post reminded me that I actually possess one of those scarves such as you describe with pockets at the ends. It's a super scarf in a very fetching rusty brown patterned colour; my only reservation about it is that it's such a long scarf that I have to wind it around my neck at least four times to enable me to put my hands in the pockets; it would be even more useful for someone with arms down to their ankles like a gorilla! ;) :lol:

 

Kind regards,


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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I just came from the Vascular doctor I see for my Raynaud's. The bad news... there is nothing more they can do for me. :( I have exhausted all treatments with no luck. She did ask me if I was planning a trip anywhere warm soon. I would love to just bury my feet and hands in the hottest sand I could find and just lay there!! I guess it really starts to hit home when you realize there is nothing more you can do and you just have to live with your symptoms and try as hard as you may to stay warm. Which isn't easy living in the great white north! Good bit of news was I had my yearly CT scan on my heart and lungs and my echo on my heart and lungs and those are looking good.. So I have something to be happy for!! Have a great weekend everyone.

Warm Hugs all around

Marsha

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Hi Marsha,

 

Sorry to hear that your vascular doctor is unable to help you anymore with any different treatments for your Raynaud's attacks. It sounds as if unfortunately you won't be able to consider any employment that accentuates the problem and I do hope that you'll be able to keep as warm as possible......climate permitting!

 

However, (wearing my Pollyanna hat ;) ) at least you've had very good news about your heart and lungs. :emoticons-yes: That certainly is a bonus, anyway!!

 

Kind regards,


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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Oh Marsha, I am THRILLED JUST thrilled with the solution to your work problem!!! WHEW!!!

It sure can be troublesome when dealing with raynauds as we do, no matter WHERE we happen to be! :(

 

Yes, please pet the your kitties for me as well and take care from the weather; we've been forecast a foot of snow; we've received 5 inches so far :P

Fortunately, I don't HAVE to go out in it, except to take one of my two dogs out; she has a tendency of running off, whereas the old one can't see/hear well, so she stays close and doesn't stay out long! ;)


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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