Scleroderma and Raynauds

Posted by mary14 @mary14, Feb 26, 2017

Loking to discuss this issue with someone experiencing it.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Welcome to Connect, Mary.
I'd like to introduce you to @kdubois @mooneagle @dash99999 @taterjoy @dogmamat @olga1dubrovsky2_babies @mcpucho and @jerseygirl926 who have all talked about Scleroderma or Raynaud's disease or both.

Mary, while we wait for the others to join the discussion, why don't you tell us a bit about yourself. For example, how long have you been experiencing scleroderma and Raynaud's? What do you find to be your biggest challenge? What tips and tricks have you learned to help you cope?

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Hi @mary14, I was just diagnosed with Raynaud's this past November, but we think I've had it since 1995, maybe earlier. (My mother has it, too.)

Normally, doctors can prescribe medications to help with blood flow, but Mayo figured out that I don't properly-metabolize most medications, and they can't use them with me. So, treatment-wise, my doctor has instructed me as follows... staying warm is essential.

For my hands... I run them under warm water regularly throughout the day. If I go outside in the winter, I always wear lined gloves.

For my feet, moisture-wicking socks are essential. My doctor initially told me to wear wool socks because wool is a fabric that still helps you retain heat when it gets wet, but I'm allergic to wool, so cotton is my next option. Additionally, even when I'm in the house, I always wear socks *and* shoes/slippers to keep my feet warm. And I always wear socks to bed. If I am outside in the cold for a long time, I use foot warmers, especially down by the front half of my feet. (A year ago and the year before, I went with each of my daughters' French classes to old Quebec City, and it is ***very*** cold there. The foot warmers worked amazingly well.)

Body-wise, in the wintertime, I'm always wearing three layers on top. I find that wearing a tighter, camisole-like shirt underneath everything really helps me keep the heat in. In the summertime, air conditioning really makes me cold quickly, so I always have what I call my "summer sweater" with me, especially if I go out to eat or to the mall because I freeze in those places. I'm usually wearing capris versus shorts, also.

I hope this info helps!

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@colleenyoung

Welcome to Connect, Mary.
I'd like to introduce you to @kdubois @mooneagle @dash99999 @taterjoy @dogmamat @olga1dubrovsky2_babies @mcpucho and @jerseygirl926 who have all talked about Scleroderma or Raynaud's disease or both.

Mary, while we wait for the others to join the discussion, why don't you tell us a bit about yourself. For example, how long have you been experiencing scleroderma and Raynaud's? What do you find to be your biggest challenge? What tips and tricks have you learned to help you cope?

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I have being diagnosed with Scleroderma as part of Systemic Sclerosis. Reunald's   disease more then 20 years ago, when this area was very new and underdeveloped. I watched myself course of this debilitating disease, which brought me today still fighting and fighting symptoms after symptoms. It is not disease, it is symptoms piling up over the years. I have MCD, moving to more moderate etc. I try to read all what associated with it.  I was introduce to a walker, cane for balance improvement.I am 70 y/o nowOlga

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I have had scleroderma and raynauds for approximately five years. I am struggling at the moment with chilblains on my toes and my big toe is swollen despite wearing warm socks etc. also I have ulcers on two of my finger. My rheumatologist wants to to start Methotexate by injection. Is anyone on this and if so do they actually help and did you have major side effects. I struggle with blood pressure medication as my blood pressure is low so they make me feel ill.

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