Anyone living with Raynaud's?

I've had severe and painful reactions to the cold since I was a kid. I suppose my family and I just thought I was "sensitive" in general and never really looked into treatment or testing. We joked that I was always "thin skinned".
Fast forward to when I was preparing for brain surgery at Mayo Clinic in 2018. I had a reaction during one of my tests. The room was cold and, after putting gel on my skin, the reaction startled the tech.
My reactions are a smidge different than what I'm seeing and hearing now -- the cold turns my skin bright red which is followed by hives and heat. It takes about 20 minutes for my skin to return to normal. And it can even be as simple as holding a can of soda on my arm. I've been told mine might be cold urticaria rather than Raynaulds. Oddly, no one else I know has this and definitely no one in my family.
Thoughts?

@omarahtopaz Have you spoken with Human Resources to see what sort of accomodationss can be made for you because of the Raynauds ?

I was diagnosed in 2018. Having been born and raised in the south but moved north later in life, I can say that the south (Florida and southern Alabama) seemed to be harder on me than the north. This sounds crazy however the air conditioners that are on close to year-round in the south was far worse than just the winter up north. I would suffer even in grocery stores due to the AC. I tried many medications but found that the sildenafil was the only thing that helped me, I only take it when my hands are numb. I got a heated vest to wear as well as heated gloves. I did notice that coffee (or other caffeinated drinks) makes it worse as they restrict the vessels. Instead, I'll have hot cocoa or decaf tea. I carried a heating pad to work to help with the freezing temps in the office. I invested in a Bair Hugger on amazon at home. It doesn't sound like my case is as severe as yours however I hope some of this may be helpful and you find relief.

Hi 👋 I was diagnosed with Raynauds about 10 years ago. My rheumatologist thought I also possibly had either lupus or Sjögren's Syndrome yet I didn't have all the symptoms then to define/diagnose. I'm not on any meds as my rheumatologist suggested I try magnesium first...and that's what I'm still doing. Unfortunately the covid vaccines kicked my dormant auto immune conditions into action with a severe flare and in 2021, I was diagnosed with Sjögren's. I was managing my symptoms for that but unfortunately my body had other ideas and I developed hypertension, atrial fibrillation and subsequently had a stroke and several TIA's. So now my previous no meds attitude has changed for life as I'm now on heart meds.

My Raynauds is not too bad on the warmer days but even a slightly cooler day in summer can result in white fingers and pain. My BP, heart and anticoagulant meds do not help as the side effects increase cold extremities.

Things that aggravate it are hanging out the washing on the line, being out in the cold even with gloves...things that help, immersing my hands or feet in a bowl of hot ish water or putting my electric blanket on and crawling under the duvet to warm up or if it's just my hands, wrapping them up in a warmed wheat bag and snuggling up jn my fleecy throw.

My rheumatologist feels hydroxy would cause me too many side effects due to having a lot of other auto immune conditions.

I take 3 capsules of magnesium triple combo (glycinate, taurate and malate), vit D3, coq10 and Vit C. I was on B complex, however, my B12 was too high so I stopped taking that.

I keep the house temperature at 20.5c/68f in the autumn and winter.

That is quite the array of drugs you have tried. My heart goes out to you. I also am living in the South and had Raynauld's along with other autoimmune diseases. My Raynauld's was never as severe as yours, however. I say had because it doesn't seem to be an issue and and I attributed it to one (or both) of two things. My husband wanted to help my health picture and started to make me fresh squeezed OJ (about a cup and a half) every morning with lots of pulp for me to drink thru the day. And also I upped (for other reasons) my Verapamil from 100mg ER to 200mg ER. That is when I noticed my Raynauld's was no longer an issue. Maybe it will help you, too. Best wishes.

Hi! Your Raynauds sounds really rough. Sorry that you had to have that amputation. I also have Raynauds, but not quite as severe as yours. Like the other replies, I agree with keeping your core warm and watching your caffiene if possible. Rest is also helpful for me. Take good care!