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For Raynaud's Sufferers

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Hello all:

 

Being from Florida, I have not had much experience with Raynauds. I have seen my toes turn blue and white every now and then, but it was a seldom occurrence. In fact, early on I was under the impression I didn't have it. Well, last Thursday through Saturday, my wife and I made a trip to Northwestern, in Chicago, to see Dr. Burt, who is an expert in stem cell transplants and Dr. Barr, a rheumatologist. They are both involved in a clinical trial entitled The ASSIST Trial. In any event, the minute I stepped off the plane, my hands turned bluer than blue. Though I sympathized before with those suffering from this disease in cold climates, I even have more sympathy now. I am also now convinced, more than ever, that I have Raynauds. It simply has not been much of a problem because of where I live. Thankfully, my wife bought me gloves before we left for Chicago. My heart goes out to all of you in colder climates. While Chicago is a beautiful city, it was good to get back home.

 

Dave in Florida

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Hi Dave.

You are lucky to be able to live in a warm climate aren't you?

Up until a few years ago, when a patient saw a doctor about Raynaud's, they'd often get told that the best prescription is to emigrate somewhere warmer!

Anyway, I am thinking of spending a vacation in Florida shortly, so I hope the warm weather continues! I know that I won't be wanting to return home to chilly England too quickly though!

Thanks for posting your 'sympathies' :rolleyes:


Take Care,

 

Steve Dickson

ISN Assistant News Guide for RSS Newsfeed

International Scleroderma Network (ISN)

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I didn't know what I had was Raynaud's for the longest time. At first I thought it was just the air conditioning in my office. I kept getting relocated to another desk and still had frozen fingers and toes. I built leg guards out of cardboard to surround my desk, kept a pair of warm slippers under my desk and wrapped a lap robe around my legs. I always wore long sleeves and made half mittens out of cut off crew sock tops, so I could have the ends of my fingers free for typing. I never saw any blueness, just white and the pepperoni red when the blood came back. The first time I saw blue was earlier this year when the wind was blowing empty wheelie bins around in the street. I went out in my shirtsleeves and sandals to get our bin, and when I came back in I had smurf hands and toes. I have since noticed that it is more likely to happen with a strong draft than an actual lowering of temperature - my fingers turn white in the freezer, but don't go blue, but when my whole body is in front of a fan, I will get blue toes, even though the room temperature is not particularly cold.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Jefa,

 

I have noticed the same thing....a draft (cold air blowing) is much worse then just the cold temperature. That is why, for me, air conditioning is actually worse then just cold temperatures.

 

Warm wishes,

Heidi

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Living in FL has exempted me from it, maybe because I am in . FL. HA Mine goes from red, to blue and then when it is really bad white. I sure hate the way it feels when I am trying to use my hands like typing or one of the other zillion things I do with my hands.

 

I never really pushed for a diagnosis until I was in for an outpatient surgery. My oxygen alarm kept going off. When they realized I was hearing it they turned the alarm off. On the way out the Anesthesiologist told me that I needed to look in to Raynauds. I went to a rheumatologist that was worthless. She told me I didn't have it...along with the list that the labs had uncovered. I changed doctors and confirmed the whole thing. A diagnosis has not fully been given but it looks like Lupus and/or Sclero.

 

I have been having a series of small surgeries and each time it is worse and worse to get the oxygen count. I am scheduled for another next week and that concerns me. According to the progress it is making I really doubt that they will be able to get any reading. The last time they were able to get one reading and went with that.

 

I tried to talk to a nurse about that and she kept telling me "no problem" and "if they can't get a reading they will not do the surgery". NO PROBLE that's nuts.

 

Then I asked the surgeon and he wasn't aware of the problems but assured me there would be no problem. I told him if that IS a problem I will tell them to talk to you.

 

This is crazy! Any idiot would know I am getting oxygen and I believe anyone with any medical understanding would know my levels are OK. Have any of you run across such as this?

Betty

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Hi, The first time I noticed my raynauds was when I would hang my wet laundry outside in the winter. I don't do that anymore when it's below freezing. I also find that it happens when my core body temperature goes down as opposed to just getting my hands cold.

Hugs, Pipes

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