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.

@margey Welcome to Mayo Clinic Connect. I’m glad you found us! Here is the link to a discussion on MCTD. You may find some of the discussion interesting and helpful,
https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

Have you had Reynauds for sometime or is this a new diagnosis? What do you do to control it and/or help yourself with the symptoms?

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AFter shingles i have now 4 auto immune and then the heart specialist says... due to very freezing hands and feet... oh i think you should look into Raynaurds. Honestly i can't be bothered with another title and not sure if there really is even anything that can be done other than manage all the symptoms for all of this auto immune stuff. My grandma had lupus so i can't count that as after shingles because looking back i have had those symptoms for years and also the Gene test shows i have always had it. I have found very thick bamboo socks and some fingerless gloves from New Zealand have helped... if anyone has more idea's i would love to know them
Take care everyone from Australia

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As Ccubed
My fingers turn white and bloodless when they are cold.
I was just diagnosed with autoimmune lupus.

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I am 74 and was recently diagnosed with Raynauds.I was worried because my toes and fingertips would turn blue then black and get really cold. My doctor told me there's nothing to do about it. On my end to simply get my extremities warm and he said to continue to take Aspirin 81 MG daily. There is no set treatment for Raynauds.

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@26sabrina

I am 74 and was recently diagnosed with Raynauds.I was worried because my toes and fingertips would turn blue then black and get really cold. My doctor told me there's nothing to do about it. On my end to simply get my extremities warm and he said to continue to take Aspirin 81 MG daily. There is no set treatment for Raynauds.

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I have had this in my hands and feet for years. The rest of my body can be warm, except hands and feet are cold and nails are blue/purple. It does to go along with other autoimmune diseases so i would insist your doctor run the numbers. The most painful is picking up ice to put in glasses. I keep warm water running in the sink to put on my throbbing fingers. A warm soab in the tub will usually help with both. He is correct in that there is no cure. I also have fibromyalgia, both thyroid diseases, osteoarthritis and the jury is still out if I have systemic lupus. Lupus and Raynauds do tend to go hand in hand. That is why I would have a panel ran for autoimmune diseases. I wish you the best. Praying for you.

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I didn't know the name of why my fingers and feet would get cold when the rest of my body was fine. As an adult I learned it was called Reynaud's. I had to wear warm gloves in the produce section of a grocery store just to pick up the chilled and wet veggies. My hands, once the blood drained out were painful and needed hot water or a microwaved cloth to warm up again. In winter I needed a heating pad kept by my feet in my bed as no amount of blankets could warm up my feet once cold.
I read that fish or krill oil could help.
In my early 70's my condition improved dramatically after I had been taking the fish oil or krill oil capsules for about 2 years.
I've also read that their are some of us born with it and for others it happens later in life and may be a symptom of other diseases. In my case I was born with it, so I don't know if fish or krill oil will help the second type of Reynaud's

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@26sabrina

I am 74 and was recently diagnosed with Raynauds.I was worried because my toes and fingertips would turn blue then black and get really cold. My doctor told me there's nothing to do about it. On my end to simply get my extremities warm and he said to continue to take Aspirin 81 MG daily. There is no set treatment for Raynauds.

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I have had Raynauds since I was 16..am 68 now. I keep my torso warm by wearing tank tops as a base layer almost year round. I apply a small amount of Nitro-bid ointment (prescription) to my wrists and top of hands which helps dilate the blood vessels without a systemic approach. I also have a heated vest, rechargeable hand warmers. At home a heating pad helps when stationary and I use a hairdryer if my fingers start to get numb. Warm water works, but you must dry your hands quickly and thoroughly or they will chill again. The heated seats and steering wheel on my car are worth every extra penny they cost.

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@26sabrina

I am 74 and was recently diagnosed with Raynauds.I was worried because my toes and fingertips would turn blue then black and get really cold. My doctor told me there's nothing to do about it. On my end to simply get my extremities warm and he said to continue to take Aspirin 81 MG daily. There is no set treatment for Raynauds.

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Good Morning. I am 92 and have had this disease since my 30's. I think your doctor may be wrong. First of all get some open finger compression gloves to wear during the day. They will help to keep your fijgers warm, and let you do whatever house work you need. They are also very inexpensive if you check out the Temu web site, or Wal Mart, or Amazon. Second, make some small packets filled with rice that you can throw in the microwave for 30 seconds. These can be put in your pocket and keep your hands warm. I like silk because they feel so good. If your fingers are turning black, this is serious. Frost Bite, and loss of limbs. It is extremely important to get that blood circulating. Have you seen how the Olympic Competitors increase circulation to their arms and legs. They rotate the arms, which make the blood flow to the hands. Remember warmth and circulation are the important factors for those hands. Many years ago, I was told by a physician that the Sympathic Nerve System is the problem, and there have been some experiments with injecting the Nerve System, when Raynauds becomes serious. You might ask your doctor about this. Have you seen a Neurologist?
Gina5009

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@barbb22

I have had Raynauds since I was 16..am 68 now. I keep my torso warm by wearing tank tops as a base layer almost year round. I apply a small amount of Nitro-bid ointment (prescription) to my wrists and top of hands which helps dilate the blood vessels without a systemic approach. I also have a heated vest, rechargeable hand warmers. At home a heating pad helps when stationary and I use a hairdryer if my fingers start to get numb. Warm water works, but you must dry your hands quickly and thoroughly or they will chill again. The heated seats and steering wheel on my car are worth every extra penny they cost.

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Some good suggestions that I might try. The Nitro-bid is an interesting idea.

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@gina5009

Good Morning. I am 92 and have had this disease since my 30's. I think your doctor may be wrong. First of all get some open finger compression gloves to wear during the day. They will help to keep your fijgers warm, and let you do whatever house work you need. They are also very inexpensive if you check out the Temu web site, or Wal Mart, or Amazon. Second, make some small packets filled with rice that you can throw in the microwave for 30 seconds. These can be put in your pocket and keep your hands warm. I like silk because they feel so good. If your fingers are turning black, this is serious. Frost Bite, and loss of limbs. It is extremely important to get that blood circulating. Have you seen how the Olympic Competitors increase circulation to their arms and legs. They rotate the arms, which make the blood flow to the hands. Remember warmth and circulation are the important factors for those hands. Many years ago, I was told by a physician that the Sympathic Nerve System is the problem, and there have been some experiments with injecting the Nerve System, when Raynauds becomes serious. You might ask your doctor about this. Have you seen a Neurologist?
Gina5009

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Interesting you mention the Nervous system. I also have peripheral neuropathy so my toes are not only blue and cold but also painful. My neurologist is baffled and we are doing the best we can because sometimes too much heat makes my feet very painful.

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