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Patty Arche-Hueck

Pain...venting need help

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My hands and knees are killing me today guys. Yesterday I was sweating and my hands were freezing cold. My hubby turned the air conditioning off for me. Does any one know how I can deal with this? I live in Miami and it usually is hot here. Please help me.

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Patty

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Hi Patty,

 

I'm sorry you are having a bad day. :(

 

The air-conditioner gets me too. I found it helps if I can stay out of any drafts - they seem to trigger the Raynaud's more than the actual temperature, although that contributes. I also try and rewarm my hands as soon as they 'start to go' because if I allow the attack to go on for too long, then I get more pain and stiffness than usual afterward. I keep a couple of those rice-filled microwaveable bags around all the time. The warmth helps the pain too.

 

Warm hugs,


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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Hi Patty

 

I'm sorry that you're feeling poorly today.

 

I'm another that finds that the air conditioning, especially in supermarkets, makes my Raynaud's much worse. In fact I've also found that if my entire body temperature falls, the dreaded 'white fingers' appear! :unsure: Even on a fairly mild day I can be seen, muffled up to my eyes, looking as if I'm on a trip to the Arctic, whilst trying to do my weekly shop! ;)

 

Unfortunately in the UK the climate tends to be very damp which can also exacerbate the stiffness and discomfort, but I've found several layers of thin clothes are warmer and less cumbersome than a heavy coat.


Jo Frowde

ISN Assistant Webmaster

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ISN Sclero Forums Manager

ISN News Manager

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International Scleroderma Network (ISN)

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Hey Patty,

 

Sorry, I can totally relate though. I wear thin gloves even in the house. As was already mentioned, I have to keep up on staying warm or I'm in trouble. Sometimes, actually a couple of times a day, I just submerge in a hot bath to get warm again. It's kind of a pain, but it works. Hang in there. :flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Me, too, Sweet. I used to do the hot bath to warm up and really miss it but between my inability to get up and down from the tub and the calcinosis on the buttocks I can't do baths anymore. I have a little heater in the bathroom and sometimes I'll put in on high, get the room super warm and jump in the shower, but then I don't' want to get out of it, and my hair will be wet so means blow drying it and that seems like too much effort just to get warm. I have gloves in many different weights and make sure I have them with me. I have blankets all over the place and have so many that I think I am going to put one in the car because my husband like things cooler than I. When I'm in the car by myself in cold weather I crank it up high and roast . Feels great.

 

miocean


ISN Artist

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I agree with the others - lots of thin layers and maybe also try the sweat cuffs for wrists?

Good luck and hope tomorrow is better.


Kay Tee

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Hi Patty

 

I agree too...air conditioning has set me a float as well...last time I just picked up a packet of snow peas in the veggie area of the grocery store and I went blue! It wasn't even fall yet. It took me awhile but eventually I figured out that it is my core temperature I need to keep warm (not just my feet and hands!).

 

I also have wool blankets around the house and wrap them entirely around me whenever I feel any type of chill.

 

Another thing I learned here was to also use those hand/feet warmers you can buy at the store for a couple of dollars.

 

I was also told to be sure I didn't get any chill or draft in the front of my neck area (use scarfs, etc) because apparently it can make our internal temperature drop a couple of degrees which would make the thyroid have to work harder.

 

Don't worry, you'll get it all figured out as to what works best for you in no time!


Sending good wishes your way!

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Hi Patty,

 

Sorry you're in such discomfort. It appears (sadly) with Sclero that our thermostats are faulty!! The slightest change in temperature can cause me pain and discomfort. I agree with the other girls: heated gloves, heat pads,layering of clothes is the best way to go. Airconditioning of ANY kind cripples me thankfully in the UK we don't need it at home. For once I'm glad I live in a cooler climate, as (at least) I can wrap up and my husband isn't made uncomfortable by being overheated because I'm cold. It's hard on our healthy partners. It's going to be a case of trial and error, finding what suits you best, Patti. You're not alone with this problem as we all have it in varying degrees but there's no easy answer. I'm afraid it's all part of the weird and wacky world of sclero!

 

Hugs,

Lynn

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Thanks to every one.

 

It's great to know you guys can help me with advice; my hubby does not know what to do sometimes. I have an electric heat pad that I am using now, and it seems to work. I change it from my hands to my knees while watching TV and then turn it off..

 

By the way, I am feeling a bit better,

hugs Patty

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