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

Posted by Terri Martin, Volunteer Mentor @windwalker, Apr 27, 2018

Anyone want to talk about Raynaud's Syndrome? My daughter has a severe case of it. I would like to start a support group here on Connect to find others, share our stories, treatments and managing daily life.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

ksdm | @ksdm | Dec 8 8:59am

In reply to @ollie2018 "I also find mittens- not gloves work best outside. Fingers can stay warmer when grouped together." + (show)

For any ailment!

SusanEllen66 | @SusanEllen66 | Dec 8 2:04pm

In reply to @luvaptos "Can you tell me more? Is it holding the metal can that bothers you? I am..." + (show)

@luvaptos
The can is so cold that it immediately makes my fingers turn white and they become very painful!

luvaptos | @luvaptos | Dec 8 2:38pm

In reply to @SusanEllen66 "@luvaptos The can is so cold that it immediately makes my fingers turn white and they..." + (show)

I am finding that using my MacBook will cause my finger tips to turn white--the temperature of the metal is the culprit.

Gigi | @kivagood101 | Dec 8 8:06pm

In reply to @SusanEllen66 "For me, I have to remember not to use whipped cream from a can!" + (show)

Don't use anything from a cold can!

Gigi | @kivagood101 | Dec 8 8:43pm

Mine started decades ago when I lived in Alaska. Frostbite fingers I thought. Left hand worse. Now at 75 have severe osteoarthritis in both hands. Fun fact tho: only troublesome in marine climates like Seattle. Minnesota- no problem!

autnchris | @autnchris | 6 days ago

In reply to @slward1951 "I so when I hear others say I have SEVERE Raynauds ….. go straight to a..." + (show)

My 19 year old daughter has Raynaud's and her fingers and toes turn white, as if all the blood has rush out of her body. Calcium channel blockers do not work, plus give her side effects. Any ideas what meds could help?

barbfe | @barbfe | 5 days ago

I take beet root powder to help with my circulation. It has helped my raynauds tremendously. I do 1 heaping tablespoon a day in water or in a shake. My doctor recommended it.

lindaadele | @lindaadele | 5 days ago

In reply to @autnchris "My 19 year old daughter has Raynaud's and her fingers and toes turn white, as if..." + (show)

I have had Reynards syndrome for most of my life my sister also has it. I believe for most of us is an auto immune disease or syndrome. I find I get it when my body is cold inside. Try to keep as warm as you can! It could be 95° outside and then my supermarket keeps freezing cold and my hands get frozen. Trying to keep as warm as you can is your best bet it’s not always easy! I can remember being in a cold position for quite a long time and it took hours for my numb fingers to heal up. I really got nervous I really didn’t know what was gonna happen with my fingers so I got super cold inside and that really was not good! I only helpful hint is try to keep your body warm inside and outside so it doesn’t give that feeling that some of numbness! it certainly can’t hurt to try to keep as warm as you can!

jshukert66 | @jshukert66 | 19 hours ago

I agree with Lindaadele. Keeping the core temperature warm has helped me as well. I also relocated to a warmer climate. One doctor recommended sildenafil to dilate the blood vessels and others use it also. I gave it a try and it works well also. Does not have the side effects of the other BP medications like amlodipine. Will give root powder a try also. Thank you all for the suggestions. This can be very debilitating especially working in the cold.