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

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.

@upnorth6

Having done this 40+ yrs in upper Midwest it is challenging. I wear mittens w/hand warmers (instead of gloves), comfortable
Ugg-type boots around the house year round & in the car during summer w/air-conditioning. I am a socks-n-sandals person now! During very severe attack on feet, having someone give you a five minute massage of your feet may help circulation & get blood flowing. Does wonders! Outside in winter has become my nemesis-I just have to know my time limits & go inside BEFORE the raynauds strikes. Take heated blanket to hockey games, etc.

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What I have found is HEAT DOES NOTHING TO HELP. It seems the autonomic system has a mind of its own. I can be sitting in a warm room and there goes the color in my fingers. I can fetch something from the freezer and my fingers remain pink. Emotions seem to be the strongest of any stimuli. I have thought a drop in barometric pressure might set it off. All I know is that it can be quite painful. Figure that! Bonnie mills

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@athenalee

I live in Vermont and use to suffer immensely from my Raynaud’s Syndrome. However, I discovered the benefits of beet root. I never ate beets as I don’t like the flavor. I purchased beet root powder and add a half tablespoon or so to juice. It really has helped!

As with all things, please clear it with your doctor. Also, I discovered through research that Raynaud’s can be ancillary to other autoimmune diseases. Unfortunately my doctor didn’t know that either. I have PBC which went undiagnosed, despite the symptoms I told my doctor about. I eventually ended up with end stage liver disease. Fortunately I received a second chance at life three years ago with a liver transplant.

Here is a link to an article on beet root and Raynaud’s.
https://pubmed.ncbi.nlm.nih.gov/31343948/

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Do you know how many mg of beet root to be effective? Thank you so much.

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@mom2204

What I have found is HEAT DOES NOTHING TO HELP. It seems the autonomic system has a mind of its own. I can be sitting in a warm room and there goes the color in my fingers. I can fetch something from the freezer and my fingers remain pink. Emotions seem to be the strongest of any stimuli. I have thought a drop in barometric pressure might set it off. All I know is that it can be quite painful. Figure that! Bonnie mills

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I have had Raynaud's for over 60 years. Started out with just a little annoyance, and is quite a challenge now. I was told I should watch it very closely , because it was possible for it to cause Frost Bite. Keep the gloves and hand warmers close. I was told this was caused by the sympathic nerve. Tends to get worse over time.
Gina5009

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@gina5009

I have had Raynaud's for over 60 years. Started out with just a little annoyance, and is quite a challenge now. I was told I should watch it very closely , because it was possible for it to cause Frost Bite. Keep the gloves and hand warmers close. I was told this was caused by the sympathic nerve. Tends to get worse over time.
Gina5009

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Hi Gina,
I understand what Raynaud’s feels like and have had episodes off and on starting about 30 or more years ago.
There are times when I have episodes that begin after brief exposures to cold, handling ice or frozen foods in the freezer.
I’ve had episodes for no apparent reason, one or more fingers turning white, numb yet very painful. Heat seems to help most time. I think there is an emotional component that stress could be a factor, but many times it come on for no apparent reason.
I also have intermittent numbness in my feet mostly at bedtime.
All my experience with complaining to doctors seems to fall on deaf ears with the usual “ you have Raynauds” as though that’s it, followed with avoid the cold.
I haven’t met a doctor suffering with Raynaud’s themselves they might be more sympathetic if they were..
I can only offer you my sympathy as a fellow sufferer, and wish you the best.
Jilly

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I have had Raynaud's for close to fifty years, it began in my thirties. For me it is more of an annoyance, brought on by cold weather or handling something that is cold. I am happy to say other than the time it takes to 'resolve' I have no real pain. Warm water helps.

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I have had Raynauds for a long time also. I noticed everyone saying their fingers turn white. Mine turn bluish/purple my toes do the same. Does anyone else have the same issue? I have no pain also, and other than gloves and wool socks, how do you keep them warm during the winter months, I live in N Idaho.

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I’ve had it for a couple of years. I’ve been told it’s an autoimmune disease. Once you have one autoimmune disease, you tend to get others. My first autoimmune disease was celiac disease, now I have a couple more. I have reynaud’s in my fingers. When it gets cold, or if I’m in the cold area of a supermarket, my fingers turn purple, then white. When they’re white, they hurt a lot. Good luck to you and your daughter. I hope they find the cause.

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@deb65

I have had Raynauds for a long time also. I noticed everyone saying their fingers turn white. Mine turn bluish/purple my toes do the same. Does anyone else have the same issue? I have no pain also, and other than gloves and wool socks, how do you keep them warm during the winter months, I live in N Idaho.

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We live in the Pacific Northwest, Central Oregon. Altitude 3,600 feet. It's not only the winter that can be problematic. Two mornings ago it was 44 degrees, rising to a high in the mid-80s. Summer mornings can be tough as well. Just try to muscle my way through. Take care.

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@woondogger ,do your fingers turn purple? Does it affect your toes also? Your right about the winters I'm in coeur d alene and our winters are long here and very cold. I struggle to keep everything warm too.

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@deb65

@woondogger ,do your fingers turn purple? Does it affect your toes also? Your right about the winters I'm in coeur d alene and our winters are long here and very cold. I struggle to keep everything warm too.

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Hello! They turn white, sometimes there is a yellowish tinge. My toes, on occasion, get more numb rather than changing color. Usually when it's really cold. At my age, turning 82 next month, I have seriously considered relocation to a warmer climate ... or renting my townhome for six months, to people who enjoy our winter sports. A ski mountain thirty minutes away. (And escaping to Arizona.) I love your part of Idaho.

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