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Biomarker for Diffuse Scleroderma skin has been discovered!


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Cold Hands


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#1 epasen

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Posted 07 June 2007 - 01:27 AM

Everytime I'm out and it gets even a bit colder than +5 C:s, my hands and fingers get really, really cold. They turn totally white and it's painfull and I can't do anything with them, and it just simply stinks to be outside. Even the warmest cloves doesn't help when it's -35 C:s here in Finland.

Does anyone else has same kind of problems with fingers/hands? I think this has something to do with scleroderma cause none of my friends has similar symptoms. How do you people handle this?

#2 Patty1

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Posted 07 June 2007 - 03:15 AM

Hi,
I have learned one of the most important thing I can do, is first, dress in layers in the coldest weather,to keep your core body temp. up, even now, today our temps should be in the mid 70's F, I have a longsleeve shirt on, plus a hoodie sweatshirt.
I also have battery operated gloves for winter, they are great, they keep your hands warmer that regular gloves, mittens are best, from what I have been told.Also, there are these wonderful little portable, disposable heat packets that you can tuck into either your gloves, or mittens, or even your socks. Raynauds affects my feet as well, turning them red,white, blue and numb. I also put on gloves to reach into the deepfreeze, as even a few seconds in it barehanded can provoke a nasty raynauds attack.
Hope this helps, good luck.
Patty

#3 Sam

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Posted 07 June 2007 - 03:24 AM

Yes I have raynauds too. For the past few days the weather has been cooler too here where I live. today we will be 90, YAY!! When my hands turn absolutely white I go warm them up in warm water and it brings them back to the color they should be. When my feet get like that too I jump in the bath tub and take a warm bath. Sometimes I use a heating pad to get warmed up or drink some hot chocolate and a blow dyer to get warm. Those are just something I do to get warmed up when needed. Well I hope this helps and try to keep warm, Sam
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#4 Sweet

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Posted 07 June 2007 - 04:59 AM

Hi,

Sounds like you are having problems with Raynauds. I have given you a link that talks about what it is and some ways to keep them warm. I hope it helps!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 peanut

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Posted 07 June 2007 - 05:00 AM

Battery operated gloves, coal warmers and do they have something like nitro paste available in Finland? In Japan they have heated cans of coffee – they look like apple juice cans – that dispense out of vending machines. I would buy them just to warm my hands and give them away once they cooled.

Blue and white hands that easily chill, or Raynauds may or may not be indicative of Scleroderma. Sometimes you can have only Raynauds. I did for years.

Stay warm,
Peanut.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#6 epasen

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Posted 07 June 2007 - 05:01 AM

Thank you very much, this is so important to for the next winter. Luckily we're having summer now, it's great when I don't have to worry about my fingers gettig cold!

New ideas will still be welcome :P :)

#7 jefa

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Posted 07 June 2007 - 06:41 AM

Sweet has given you a good link. This topic comes up quite regularly on the forums, so do have a search through the boards and read all of the other comments people have made. There are some very useful suggestions here.
Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#8 Joe

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Posted 07 June 2007 - 12:41 PM

I strongly suggest that you have your Dr. prescribe Nitro Bid 2% ointment. Your hands turn white because your blood vessels clamp down and reduce blood flow. The Nitro paste opens up youe blood vessels wide open in a few minutes and it seems to last for 4 or more hours for me. It will reduce any pain you have due to the cold. Also, get yourself some good mittens. Finger gloves just don't do it. I have been able to snow blow the drive with the paste and good mittens here in Colorado with nary a problem. Hope this helps.

Joe

#9 nan

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Posted 07 June 2007 - 01:00 PM

Hi,
My Raynaud's is bad also. Even in the summer, when I go from heat to ac. I use warmeups at home for my hands and feet. They're like mittens for your hands and feet. You heat them up in the microwave. I ordered them online. I think there is a link on this site. I also use those little bags that you shake and they warm up and you can keep them in your mittens. I hope this helps some. Raynaud's can be quite painful!
Nan

#10 Sharonvandee

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Posted 07 June 2007 - 01:04 PM

Hey

I wrote a similar post a few weeks ago and the girls suggested corn bags in Australia we have wheat bag, but the concept is the same put them in the microwave heat them up and use them for warmth I use mine most of the day here in Austrlia even though temp is only 10-15 degree celcius as the cold really knock my hands around.

Take Care here sending you some sun and warmth
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#11 Joe

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Posted 07 June 2007 - 06:06 PM

When I go to work, I put hand warmers in my pockets. They really last a long time and are fairly inexpensive.

I also have a good space heater in my office at work. It cranks the heat almost too hot, just the way I like it. I bought a truck with heated seats. They are tremendously beneficial in winter. I wish I could have gotten a heated steering wheel.

Small things like this add up and help manage this dread situation...

Joe

#12 relicmom1

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Posted 07 June 2007 - 06:25 PM

I also have Raynauds. My rheumatologist told me to wear gloves when I go to the store and reach into the freezers or refrigerated sections, to always carry a sweater with me, even in the hot and humid summers we have here in VA because going in and out of the heat into air conditioning also can trigger it. I also am suppose to be sleeping with gloves on, but that is more for the moisturizing as I'm suppose to wear cotton gloves and put on a good rich moisturizer then the gloves. It is a miserable thing, this raynauds.
Peace :)
Barbara aka relicmom1

#13 WestCoast1

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Posted 07 June 2007 - 06:30 PM

Hello there,
This is always a great subject. Everyone has different and wonderful ideas to combat Raynauds.

One thing that I noticed was that when I am very active, in the coldest of winters, my fingers seem to be okay. When I am not active, my fingers are painfully cold. My thought is that my core temperature has alot to do with my Raynauds activity.
*WestCoast*

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#14 jefa

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Posted 07 June 2007 - 07:54 PM

You raise a good point, Erin, about movement. I just went back and read the whole page (the one linked to by Sweet and Joe) and found this great memory aid for all the ways you can rewarm from Raynaud's attacks:

Think W-W-W-W-W-Warm!
Wiggle - Windmills - Warmpits - Warm Water - Warmers - Wax


Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)

#15 epasen

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Posted 08 June 2007 - 02:35 AM

I guess I should start looking for a hand warmers to buy - from fin or somewhere from europe. Luckily I have still time till semptember at least when it'll start to get a bit colder.

Thanks to everyone : )

#16 kobi

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Posted 08 June 2007 - 04:55 AM

Hi cold hands are the result of poor circulation, My hands were what first drew the doctors attention to scleroderma. I some time later fell of the trampoline and landed on the concrete this caused a big reaction to my finger l have photos that l had to show specailist but l dont know how to get them on this site keep warm
kobi.

#17 WestCoast1

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Posted 08 June 2007 - 06:04 AM

Hi Kobi~
If you are intereseted in posting your hand photo on the forum you should first have the photo saved on your computer.
1. click on your name on the left side of your post.
2. when you are at your "profile" go to the bottom of the page and click on "Edit my Profile".
3. then look to the left of the page and scrole down, click on "Profile Photo"
4. then click on the "browse" buttom next to the words saying Upload a new image.
5. when you Browse for a photo, it will take you to your computer files where you can choose the one of your hand for instance, and then click "Update Photo and it will be added to your profile page.

Hope this helps. One thing to remember is that the photo must be saved as a JPG and the size must be reduced to 100KB.(usually if you resize the photo to 5 x 7 inches it will be the right size to upload)

Hope that this helps and is not confusing. Let me know if you have any further questions.
*WestCoast*

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#18 epasen

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Posted 13 June 2007 - 01:48 AM

Does anyone know can raynauds get any worse and if why is that? Does being in cold can make my fingers even more sensitive for cold?

#19 WestCoast1

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Posted 13 June 2007 - 04:25 AM

Raynauds can get "out of control" if you dont take care of every little issue that arises. I just came back from the doctor and he was saying that I need to keep them warm and if not I need to go on medication. This is because there is little circulation in those extremities. This makes it hard for the skin to stay healthy on the fingers.

I do think warmth is the key to our healthy fingers, but sometimes it is out of our control and that is when meds become useful.

Here is a link to look at Raynauds Prevention:
http://www.sclero.or...prevention.html
*WestCoast*

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#20 Lynda

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Posted 13 June 2007 - 05:19 AM

Hi,

I have Raynaud's severe and my doctor put me on Adalat, it is used for blood pressure but it did the job, hands and feet look good. In the winter I wear ski mits they have the best insulation. Also, when they are cold I do excercises to get the blood flowing. Pumping my hands and wiggling the fingers and toes helps too. I would be careful using hot water or heating pads you may burn the skin.

Good luck.

Lynda