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

That is funny. When I was told I had Reynauds the doctor (who I was not thrilled with) suggested I move to Arizona (I’m in New York). Have you made the move?

Yes, we did make the move, arriving 6 days ago and already bought a house! So far I’ve only had one Raynaud's episode which was last night while outside enjoying live music. It’s been warm enough I haven’t had to wear a tank top as a base layer, and waking up to a blue sky and sunshine feeds my soul. We chose a 45+ community with 4 golf courses (we both play) and fingers crossed, prayers said, we will love it here. A bonus is there is a Mayo Clinic nearby in Scottsdale!

@markamft Welcome to Mayo Connect! When you and @barbb22 talk about moving to Arizona, i think I should, too. But I live in Colorado and could never leave!

I presented with Raynauds (Hands and feet), swollen hands/feet, general malaise in addition to being very positive for MCTD. The ANA/RNP panel showed genetic tendencies, the rest was the subjective part of the diagnosis. I found along the way that a morning walk, and generally keeping my core warm helped. My job then was sedentary, so I would periodically go rinse my hands in warm, not hot, water until they were pink again. This really helped avoid pain. Now and then, my finger tips were numb, but massage brought them back. I never did get chilblains. There are meds for this, but I never took those. However, I was on Methotrexate for the MCTD for years, and now it is rare for my hands to look "psychadelic."

I have had Raynauds for years and it got worse. I took pictures of my stomach, thighs, nose, ears as well. I kept getting told I had a “bad case” of it. I saw a new RA dr who who felt it was CAD (cold agglutinate disorder). My research came up it didn’t fit. I found a good Hematologist who immediately said you don’t have that. After tons of blood tests it became clear that I have Cryoglobulinemia Type 1. So, my infusions changed from Remicade to Rituxan to handle both diseases.

That’s great news! Life quality drastically improved!

I’m in California but it’s chilly by the ocean. The fog and clouds are brutal in Winter but I can wear 4 layers with 2 types of shoes to manage the changes in temperature.

I can’t move away.

The dr offices and ER here are fine with letting me leave with no detectable pulse on the finger monitor.

I have red blood cell disease and now kidney disease so the Raynauds is not as interesting…

Had osteomyelitis on my thumb bone and needed antibiotics for 7 weeks but now I’m back to unwell and uncomfortable but stable.

My dr recommended Arizona! Lol

in reply to @windwalker I am so sorry about your daughter! I too have severe Raynaud's Syndrome, and for a period of time I was taking a daily low dose aspirin at the behest of my former rheumatologist, who thought that it would be of help, but it was not.
I did see a new rheumatologist just a couple of weeks ago, and her only suggestion was to wear gloves, which I do pretty much everywhere I go, especially now that the weather is colder. Warm water helps as well. I have been advised to learn to live with it, which is what I have been doing for the past 30 plus years.
Recently I had a 2 hour MRI and when I went into the room where the machine was located, my fingers immediately turned white. I asked the technician if he had any gloves, which he did not, and I was advised to sit on my hands during the procedure. For what it is worth, I was required to remove all of my clothing except for my socks because they were concerned that my clothing may have had metal fibers. I was not wearing a mesh outfit, everything was 100 percent cotton. I had dressed as I always do for these exams. I was not even given a blanket or a pillow for my neck. Suffice to say that I came home and drafted a 5 page letter to the supervisor of the facility about my experience, and offered to come down and give him a powerpoint lecture on the heavy metals that are used in most all textile manufacturing. I have a B.S in Home Economics with an emphasis on Textile Manufacturing and Fashion Merchandising, and I am 100 percent certain that my clothing did not contain metal fibers. Interestingly enough, they were not concerned about possible metal fibers in my socks. Had they, I probably would have walked out because I was so cold. I apologize for going off on a tangent here. But many people who do not have the problem that your daughter and I share, simply do not understand how cold temperatures can have an adverse effect on our physical well being.
I wish you the best of luck. I have a great pair of fur lined ski gloves that I have to put on every time I go to the grocery store. I also bought a lovely pair of handmade wrist warmers that are made of very nice wool, and I often put them on at night when I go to bed.

I have bought hand warmers to keep in pockets. They help greatly. You can buy them on Amazon.

My daughter also has it. I am so glad you mentioned it. I am anxious to read the comments and stories. Thank you!

Well said! I watch my daughter suffer with it and I am always looking for things to help her keep those delicate hands and feet warm. I never heard of wrist warmers, what a great idea. I shall look or some or even crochet some. Thank you so much!