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

good luck!

I have it because a rare autoimmune disease damaged my arteries. Damaged arteries damaged my nerves. I now have Polyneuropathy and Raynaud’s.

The best advice I give to myself is, “do not touch the can of Reddi Whip!” The cold can hurts!

I always think I have it because I grew up in Chicago and when I was very young (3 and 4, etc) we played out in the bitter cold (sometimes sub zero windchill) for hours with not the greatest gloves or boots. We had a huge sledding hill right across the street and my mom could see us from the window so she figured we were fine. It never occurred to her that our fingers and toes were past the point of no return. Sometimes I would come in crying because I has stayed out too long and my fingers and toes ached and burned. I'm sure there's more to it than that but I always wondered if it was a contributing factor? I do have 2 other auto immune disorders so it's not unusual to have a cluster of them. Crohn's and Lupus. The Raynauds sort of goes along with those I guess. When I'm wearing sandals and my toes are exposed to air conditioning, they literally turn blackish blue and become completely numb. My fingers turn white and lose all feeling. I'm just greatful to be living in a warm temperate climate these days!

Does anyone know if Botox works?

I have had Raynaud's for 40 years. Mostly very cold fingers and toes for the first 20 years that progressed to frequent total shutdown of the vessels turning my fingers deathly white or almost black until I could get them in warm/hot water. I am unable to use any type of bp medication so I keep hand warmers in my pockets most of the time. The chemical type take too long to warm up, and sometimes never get warm enough to be helpful. The rechargeable kind are very helpful. They sell them on Amazon. I am always searching for gloves that are helpful, but mittens work best for me. I'm also hoping to find something for my feet while hiking in the winter. The Little Hotties burn the bottoms of my feet, and the battery heated socks work well, but bag around my ankles. If anyone has found a brand they love please share. Thanks.

I would love to join a support group for Raynaud's Syndrome. Please include me if you start one up. I have had raynauds for 30 years. And have been thru it all, its part of a bigger autoimmune disease called Crest syndrome. Thank God I have had wonderful rheumatologist over the years. I am on generic Viagra for many years, 3 times a day. I'm also on Losartan to all open up blood vessels in my hands and feet. My hands are worse. I get ulcers on my fingers mostly in winter a d if they get infected I have gotten osteomyelitis and almost had my fingers amputated. So I have alot of preventative measures that I have learned with experience. I also have a team of wonderful drs that respect my opinion and experience with this disease. I am also a nurse, and that helps. It's amazing how other people I have met get no pr poor information and help from their drs.

Have you been to Raynauds.org ?

Anyone know what type of moisturizer works best my in keeping g toes moist? Also does anyone think you can keep them too moist?