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Raynaud's Syndrome: Anyone want to talk about Raynaud’s?

Posted by Terri Martin, Volunteer Mentor @windwalker, Apr 27, 2018

Anyone want to talk about Raynaud's Syndrome? My daughter has a severe case of it. I would like to start a support group here on Connect to find others, share our stories, treatments and managing daily life.

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

frances007 | @frances007 | Dec 17, 2023

in reply to @sandicam Yes, and a hat goes a long way too. I am rarely without my baseball cap. It has become a permanent fixture, and I continually have a "hat head." LOL.

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1 reply
laurie6 | @laurie6 | Dec 19, 2023
In reply to @frances007 "in reply to @sandicam Yes, and a hat goes a long way too. I am rarely..." + (show)
@frances007

in reply to @sandicam Yes, and a hat goes a long way too. I am rarely without my baseball cap. It has become a permanent fixture, and I continually have a "hat head." LOL.

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The scarf suggestion has been helpful. Lined boots 🥾 are great and I try to carry regular shoes 👟 as well as flip flops 🩴 …

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slward1951 | @slward1951 | Dec 20, 2023

Well yes! I was told by a hematologist my Raynauds is a severe case and go back to my RA doctor for it. I took pictures of my thighs, butt cheeks, stomach and the usual places. At the same time my RBCs were agglutinating (clumping). I would have to go back in for retest. Then without testing for it I was told I had Cold Agglutin Disorder. RA dr changed me from Remicade infusions to Rituxan. I hated the guessing. So I self directed myself to a new Oncologist who did tons of tests to find I have Cryoglobulinemia Type 1. So moral to the story is go with your gut then go to the correct specialist to dive into your situation. Good Luck!🌸

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slward1951 | @slward1951 | Dec 22, 2023

I so when I hear others say I have SEVERE Raynauds ….. go straight to a Hematologist. My Raynauds also hit my thighs, stomach, upper arms, butt cheeks. “Yep your Raynauds is severe”, I heard.
One year later I searched out a new Hematolodist as my Rheumatologist had dxd me with Cold Agglutination. He said you don’t fit that. Tons of tests later I was told I have the ever rare Cryoglobulinemia Type 1.
My motto question everything and everyone!
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kelvinthomas | @kelvinthomas | Dec 25, 2023
In reply to @wieczorkemaria "Good Morning, I have had raynauds for about 20 years. Only getting worse. Mornings are very..." + (show)
@wieczorkemaria

Good Morning, I have had raynauds for about 20 years. Only getting worse. Mornings are very bad. Fingers get numb at work and difficult to type. Magical hands I call it. My fingers turn anywhere from red, white, grey and purple. So annoying. Numbness and tingling in fingers and toes. I've tried the norvasc for so many years but have major systemic issues and my rheumy switched on my BP meds to procardia to help with the raynauds. It got better at first and then back to normal. cold and hot water is a no no. Warm is best. I use the instant heat pads at work and also use the fingerless gloves. It really never goes away.

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My fingers do the same changing of color (white, gray, ruby red). You are so right, stay away from very cold or hot water. I took gloves off in -15 degrees F and couldn't get back on. Also had taken boots off as water got into boots. Couldn't get them back on. Got to cabin and used Hot water. Pain was unbearable I've had Raynauds for 55 years.
1. NIH, etc. feel it's genetic.
2. Toes tingle mostly at night.
There is no known cure. The tiny veins in fingers and feet are just there. Keep stress levels down. I know how you feel.

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