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

I also buy handwarmers by the case from Costco. The pain when my hands get cold is unbearable, so I put the small, disposable hand warmer packets (which you have to activate by squeezing) right inside of my thick mittens before a dog walk. I remember once being in so much pain when walking my son around on Halloween years ago that I scavenged plastic newspaper sleeves from junk newspapers lying on neighbors’ lawns to put on my hands — a good fix in an emergency when the pain is unbearable and the weather turns unexpectedly cold. It looked but it was Halloween so no one noticed!

In addition to keeping your core warm, I will add that wearing a hat and a scarf will also help. Normally, a lot of heat is lost through the head.

I have had Raynaud Syndrome my entire life since I started ice skating when my toes were white. I also was very athletic and it turned out that I had Ehlers Danlos where Raynaud is a co-morbid condition, as is POTS which I also have. I agree about the extensive work ups for sure. I have a LOT of allergies and became so utterly run down with all my sports and activities through life, I now have Mast Cell Activation…..again an often co-morbid condition with EDS. With EDSh think, double-jointed with loose joints which is due to a collagen deficiency , again, contributes to lack of sufficient blood flow. In my forties I had mostly deformed toes long after I finished skating, because the white toes eventually lost so much blood flow they became hammered. …..contracted…..this happened to my sisters fingers. Same reasons. I ended up having pins in every toe of both feet. Also severe carpel tunnel, and eventually shoveling snow my thumbs dislocated from my hand because of lack of blood flow. Both thumbs had to be fused w titanium long, pins. If I had ever known all of this as a young person I would have altered just about everything in my life to avoid the many surgeries that became necessary. I would certainly make sure that you are not dealing with EDS. I see a LOT of it in excellent athletes and in dance and gymnastics……hyper mobile!……what do I take for Raynaud? I use Salon Pas, …..the pain patches. They soak in through the pores and feel wonderful…..each patch gives me better circulation and pain relief, and I plaster them all over any joint that aches!……the inflammation is reduced through the pores and not the kidney. Needless to say, I ended up moving to Florida where this disorder ceases to be painful!……

For anyone withRaynauds or any nerve injury problem, I’d like to suggest wearing gloves or socks made of neoprene, like scuba diving equipment. You may be able to buy sheets of neoprene in a diving shop and make what you need using the glue they have, instead of ‘’sewing’’. The thicker the neoprene the warmer they are. Mittens, of course, are warmer than gloves in any fabric, but neoprene has always provided the best protection.

Hi, my doctor works with a compound pharmacy and they make me a cream called C-Diltiazem 2% perm gel. Then the prescription reads, compound as: diltiazem 2% gel applied wearing gloves pea-sized amount topically.
It’s a vaso dilator I believe, but I can’t take pills because it lowers my pressure to much. So I apply in the am while wearing gloves. I begin at the base of each finger and thumb and put a very thin amount on each. I wait till it dries and that’s it.
My understanding is that it opens blood vessels to help get blood flow to my fingertips. It works better some days than others and honestly I don’t know why. I wear mittens always outside with warm packets inside.
Not sure if your doctor would approve, but might be worth having the conversation.
Happy Holidays…Joanne

Hello I’ve just been told by my primary doctor that I have Reynauds disease I’ve noticed I would get hot come in spells my hands if they get cold is horrible now I know why I’m not sure of all of this whole thing but what I do know it’s horrible painful

I have a similar conditiion. When any part of my body is exposed to cold air or liquid, that area starts to itch, get very red and then hurt. I was told by a vascular doc it is not Raynauds. After 5 docs, I was told I have Cold Urticaria. I was advised to take an antihistamine like Zyrtec for a month or two. I did, and it helped the itch part only.

I was quite surprised to find that my rheumatologist prescribes Viagra for raynaud's & chilblains. I haven't tried it yet.

Really? I never heard of that. I just have a heated steering wheel and keep warm.

I have had Raynauds my whole life. Mainly numb fingers and toes when in cold temperatures that turn color- sometimes white. It was painful as a child but not as an adult. I had Covid and subsequently got Guillane Barre disease as a result which started with Raynauds symptoms. After the right treatment I am in recovery mode. The only pain is in my upper back and it is severe. Anyone have this experience? GBS is autoimmune - wondering if there is a link to Raynauds?