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

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.

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

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!🌸

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!

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.

My 19 year old daughter has Raynaud's and sensitivity clothing issues, so we are having a really hard time finding clothing, under garments and socks, let alone coats and gloves.
Any suggestions?

For me, I have to remember not to use whipped cream from a can!

Can you tell me more? Is it holding the metal can that bothers you? I am new to all this so sorry about the weird question.

Just being cold mainly sets my fingers on fire! Feels like I have pins and needles stabbing into them. A hot shower only made it more severe during my last episode. Normally I’m a hot blooded person- but, if I get cold - this last incident all fingers were affected - it was horrible.

I also find mittens- not gloves work best outside. Fingers can stay warmer when grouped together.