Anyone living with Raynaud's?

Hey Woody319, I have Raynaud's and doctors do not seem to be concerned about it at all. Even a Rheumatologist wasn't concerned.

I had it for years before I was diagnosed. My hands and feet stay cold (I have both Thyroid Diseases as well) and my nails turn blue....this does not occur all the time.

When I pick up anything cold, such as ice, I keep warm water running at the kitchen sink to run my hands under as my hands hurt like the dickens!

There is a great connection between Raynaud's and other autoimmune diseases such as Lupus, etc.,

I do not take anything for mine.

I find great relief with the Bed Buddy Heat Packs (Amazon). I get in the recliner and put one across my feet and one across my hands. I usually get relief in a few minutes.

I hope this helps in some way. God Bless You and praying for relief.

Hi @woody319, there are several discussions about Raynaud syndrome. Here's the main one:
- Raynaud's Syndrome: Anyone want to talk about Raynaud’s?
https://connect.mayoclinic.org/discussion/raynauds-syndrome/

See all related discussions here: https://connect.mayoclinic.org/search/discussions/?search=Raynaud

I appreciate your starting a new discussion in 2024. How about changing the title to invite other? Can I change the title of this new discussion to: Living with Raynaud's syndrome: What helps you?

Hi woody319,
I have been on HCQ for UCTD since 2018. Raynaud’s has been a continuing issue. After going on LDN for several months, I no longer have to go to sleep wearing sox and an extra blanket on my feet! Alas, my hands still turn various shades of red, white and blue-purple when exposed to cold. But I do think the low-dose naltrexone made a difference, even though I no longer take it. Or possibly it’s the years-long use of the HCQ. Neither is a cure, but definitely am somewhat improved.

Hello Woody319.

I have had Raynauds since birth. I was just diagnosed in September of 2023. Other than running my hands under warm hot water, I haven’t found anything. I have just stated a high blood pressure medication to help with circulation. I was diagnosed about a month ago with systemic scleroderma. Waiting for test results to determine course of treatment.

@sue1392 Welcome to Mayo Clinic Connect! I’m happy you found this site and this support/discussion group.
Have the doctors said what the course of treatment might be? What treatment are you on for scleroderma?

I take amlodipine, a calcium channel blocker that dilates arteries, improves blood flow to the extremities and helps prevent the Raynauds. It’s typically used for high BP so one has to have a bit of a cushion, in case BP goes down. The color changes are not a problem but pain and freezing cold hands and feet or ulcerations certainly are if you have that.

Yes. I have Raynaulds but, truthfully that is the least of my problems. I remember exactly when it appeared. I am an RN and was taking my first ACLS coarse when I was about 50. I got into my car after the first day (I felt stressed) and noticed that my fingers were as white as a dead person and there was a definite cutoff. Being a nurse, I knew it was Raynaulds. Stress can definitely aggravate Raynaulds too. I had stopped seeing a rheumatologist because I was unsatisfied with him & then knew that it was time to find another one. Going by my age, he diagnosed me with Scleroderma after doing some testing. Raynaulds that shows up at the age of 50 or over is usually a sign of another autoimmune disease along with it. I also have sjogrens and vasculitis. So that is why I say that Raynaulds is the least of my problems. I also take Plaquenil but thought it was mostly for the Scleroderma. You probably already do all of these things but I am very careful to keep my hands & feet warm. I wear gloves & wool socks in cold weather. I have no signs of ulcers after about 24 years.

Right now i take 2 high blood pressure meds. I find out on 5/8 what the course of treatment will be for the scleroderma

Hi, I wrote in previous threads about using a vaso dialator finger cream made at a compound pharmacy. Forgive my spelling it could be incorrect.
It helped so much but time consuming to apply with gloves and allow to dry. It was worth it.
I decided to leave New England last August and go south. This health issue was by far my least issue. Now since in the south it’s absolutely wonderful as well as my spirit. It was tough for us to up and sell and just take the leap. The state has sunny months longer that just helps your spirit, well mine anyway.
Sure, it was very tough but we are 70 have kids, grandkids and just wanted to feel better. We hated the cold. My hands are so much better and my feet too. It was a game changer in many ways and I completely understand not everyone can take the leap.
Keep them warm, cover anything you drink cold and you’ll find what will work best for you.
Best wishes…Joanne

I also have Sjogren's and a host of other things, Reynauld amoung them. My husband in his efforts to help me has been making fresh squeezed orange every day (with lots of pulp) and I realized that my Reynauld's had stopped. If the temp in the house got below 65 degrees. I couldn't stand it. Found myself wearing gloves inside. Now no more Reynauld's.