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Raynaud's Association
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Topic Title: Does it ever go away
Topic Summary: I was hoping for relieve
Created On: 03/28/2006 10:27 AM
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 03/28/2006 10:27 AM
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sheila1366

Posts: 60
Joined: 02/07/2006

I continue to have trouble with this.My fingers sting and fill like I have them in ice water.My toes sting but not as bad as my fingers and finger tips.

How many of you have had this pain everyday?I will deal with the pain the best I can as long as the condition doesn't get worse.I just wish for once it would go away for just a day.

Sheila

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Cold hands warm heart
 03/28/2006 11:17 AM
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GraciasMom

Posts: 290
Joined: 10/27/2005

Oh Sheila, I'm so sorry to hear that it is not going well for you. What are you on? have you seen the rhuemitoligist lately? Sometimes when we've gone to the doctor she's been having a good couple of days and when she asks I say it's okay. Keep a record of how fequently you are having attacks and put it on a pain or discomfort meter (1-10). That will really help you to deal with the doctor and get what you need. But sometimes there is nothing like a sholder to cry on and a hug when your going through the pain whether your three or not so much three anymore. Here's a hug from me and a sholder I will pray that you get a break from it. sounds like you could really use one. Warmly Renee

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My 6 year old has had severe secondary Raynaud's all of her life. She makes use of a thermal stabalization assistance dog.
 03/29/2006 09:14 PM
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Roxy

Posts: 61
Joined: 11/08/2005

Sheila----I know exactly how you feel...Todays temperature was a glorious 12( it has been -2 for a week now) so 12 is great!! But My hands are still purple and blue and cold as ice. I am going to get an appointment with a Rheum soon I hope but I have to go through my GP first. I have finally decided to take the advice of everybody here and let a Rheum take control of this disease. I had been hoping that with the warm weather starting that the attacks would go away like they have ever other year but it doesn't seem that way. I hope you take this advice too. I like the suggestion by Renee to make a record of attacks and pain level. I'm going to try that too. Good luck to you and try to keep warm.-----Roxy
 03/29/2006 10:19 PM
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olebandit

Posts: 1594
Joined: 08/23/2005

Roxy .... getting some info on the Canadian money for you and will let you know as soon as I find out something.

Sheila .... I can so relate to the ice feeling. I remember going for three solid months at one point where it felt like my arms from my elbows down to my fingertips and my legs, from my knees to my toes were actually stuck in a big chest full of ice and I could not get them out. Not even for one second. I just crawled up in bed and cried my ass off. I hurt so bad I could not talk to anyone, could not eat, could not do anything but take pain medication and it did not do a damn thing for me. And I was taking huge doses of morphine .... no Loritabs, I mean the real stuff. It was the most horrible three months of my life. That was when I started thinking there was no reason that I cared about even living like that anymore. Thank GOD, it finally started to get better. I was so helpless my mother tried to feed me oatmeal sitting on the side of the bed. I stayed in the hot shower or in bed in tears. It was awful beyond description. So yes, I understand, believe me. It is a pretty humiliating experience for a 50 year old man to be like that when you have spent your life as an athlete and a bad ass. If you are anywhere near there, I feel for you. It really sucks. I was in the hospital seven times in sixteen months. Just hang in there and pray. That is about all I can say. It started getting better for me and has improved a little more each year. Now I am pretty functional most of the time. It has been an uphill battle, but I am finally winning it. I hope the best for you. You just can't give up.

Robert

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I share information based on my years of experience with autoimmune disorders. Your doctor should be consulted when you are at risk for potentially serious problems. I am not a medical professional, just another patient with lots of experiences.
 03/29/2006 10:25 PM
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Roxy

Posts: 61
Joined: 11/08/2005

Thanks Robert for checking into that for me...you can PM me instead of posting if you want.....Roxy
 03/30/2006 06:41 AM
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sticklady

Posts: 85
Joined: 01/20/2005

Hi Roxy,

Do you have a bank account?  If so, have you considered opening a PayPal account?  I have used PayPal for years and think it is great.  It is very safe and convenient for when you want to make any online purchases.  It has gotten so popular that many sites accept paypal as a payment method, including this one  That is how I sent my donation.

Paypal is free if you do less than $100 worth of buying/selling a month....at least that's what it used to be.  It really is great, safe, and easy.  You can pay anyone in the world, who has an email address, money and PayPal does all the conversions for you.  You should look into it if you are able.

Just a thought.

Good luck and Be Well.

Tracy

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Treat your body as if you will live forever and your spirit as if you will die tomorrow.
 03/30/2006 06:59 AM
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sticklady

Posts: 85
Joined: 01/20/2005

Hi Sheila,

I get that feeling of my hands and/or feet totally being stuck in ice.  Thankfully it is not all the time. It is terrible and nothing seems to warm them.  Sometimes only a couple of fingers will have that feeling and not all of them, but usually if my feet are like that, it is all my toes and my foot too.  I take a lot of hot showers, that seems to help a little.  I also started using those heated wrist bands and that seems to help some too.  I didn't try the ones offered in the special offers section of this site yet, but I am going to order some soon to give them a try....they would be a little nicer to wear when I am away from home or going out someplace.  When I am home I can use the ugly black Crazy Therma Bands, they aren't as nice looking and probably a little more bulky than the other bands, but they do help and cost wise it would probably work out the same since you have to purchase the hand warmers to uses in them.

I hope by the time you read this you are feeling better

Tracy

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Treat your body as if you will live forever and your spirit as if you will die tomorrow.
 03/30/2006 07:08 AM
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olebandit

Posts: 1594
Joined: 08/23/2005

Roxy,
Tracy is correct about the paypal account. It has pretty much become the way most companies accept payments for goods internationally or whatever. It is very secure. That is how most payments are made to the site and you can use you checking account. That is also how I have made my donation to the site and lots of things I do. You will receive account statements from them, etc. It is safe and very professionally run. I am unaware of any problems anyone has had using it. I have not yet heard regarding writing a check in foreign funds, but you can set up a paypal account right on this site at the donation location.

Robert

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I share information based on my years of experience with autoimmune disorders. Your doctor should be consulted when you are at risk for potentially serious problems. I am not a medical professional, just another patient with lots of experiences.
 03/30/2006 07:35 AM
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Roxy

Posts: 61
Joined: 11/08/2005

Tracy & Robert----Thanks for the paypal info. I was under the impression that paypal only used credit cards. I get paid on Friday so I will donate then. Thanks a bunch for everything.----Roxy

Edited: 03/30/2006 at 07:36 AM by Roxy
 03/30/2006 07:46 AM
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olebandit

Posts: 1594
Joined: 08/23/2005

Roxy,
Don't thank me....thank you.

Robert

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I share information based on my years of experience with autoimmune disorders. Your doctor should be consulted when you are at risk for potentially serious problems. I am not a medical professional, just another patient with lots of experiences.
 03/30/2006 08:05 AM
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sticklady

Posts: 85
Joined: 01/20/2005

That's right Robert......Thank you....better yet, How about we thank Everyone  We are like one big team working together to find comfort and to win a fight we all need to win......we will get there!  One helpful message and one small donation at a time.

WE WILL WIN THIS FIGHT.....TOGETHER! 

Be Well.

Tracy

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Treat your body as if you will live forever and your spirit as if you will die tomorrow.
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