Raynaud's Syndrome

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 group.

Being raised in a zone 9 I never even realized I had raynaud's until I took my first trip to the mountains in my 20's. My fingers and toes first turn red then pure white. The pain I can describe as having nails driven through your fingernails. I learned that snow skiing is not for me! Even good gloves won't keep me pain below 40! Even when active. Now at age 69 and living in a region with colder winters it is no worse but am always prepared. Like many I carry a pair of gloves and always bring a jacket (others mentioned keeping the core warm) to movie theaters and restaurants even in the summer if air conditioning is too cold. I have a pair of flexible soft leather gloves with rabbit hair lining which feel heavenly and I put on when shopping in produce isles. Water does trigger the loss of hand temp and wet produce can quickly turn my fingers white in a cool grocery. Then what can I do, basically nothing except hope the bathroom has warm water to run over my fingers. A surprisingly helpful way to warm up white toes, besides layers of blankets(which are surprisingly unhelpful once feet are white) or a heating pad is to wear a warm hat! Your body wants to keep the circulation in your brain #1 and if it has good blood flow it will send blood out to other areas. Also because I love to garden and stay out past my outdoor temp trigger points the fastest way to recover I have found is to put a washcloths in a microwave, heat till very warm, not scalding and wrap around fingers. This will get the blood flowing, first fingers will return from white to bright red and hurt like heck, then in a few minutes can return to flesh color and stop hurting.
I have read that those of us born with it have a genetic predisposition to having it and although painful and inconvenient it is not normally a significant health issue. For those who develop this later in life it is a signal that something else may be going on in your body like RA.

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@gardeningjunkie

Being raised in a zone 9 I never even realized I had raynaud's until I took my first trip to the mountains in my 20's. My fingers and toes first turn red then pure white. The pain I can describe as having nails driven through your fingernails. I learned that snow skiing is not for me! Even good gloves won't keep me pain below 40! Even when active. Now at age 69 and living in a region with colder winters it is no worse but am always prepared. Like many I carry a pair of gloves and always bring a jacket (others mentioned keeping the core warm) to movie theaters and restaurants even in the summer if air conditioning is too cold. I have a pair of flexible soft leather gloves with rabbit hair lining which feel heavenly and I put on when shopping in produce isles. Water does trigger the loss of hand temp and wet produce can quickly turn my fingers white in a cool grocery. Then what can I do, basically nothing except hope the bathroom has warm water to run over my fingers. A surprisingly helpful way to warm up white toes, besides layers of blankets(which are surprisingly unhelpful once feet are white) or a heating pad is to wear a warm hat! Your body wants to keep the circulation in your brain #1 and if it has good blood flow it will send blood out to other areas. Also because I love to garden and stay out past my outdoor temp trigger points the fastest way to recover I have found is to put a washcloths in a microwave, heat till very warm, not scalding and wrap around fingers. This will get the blood flowing, first fingers will return from white to bright red and hurt like heck, then in a few minutes can return to flesh color and stop hurting.
I have read that those of us born with it have a genetic predisposition to having it and although painful and inconvenient it is not normally a significant health issue. For those who develop this later in life it is a signal that something else may be going on in your body like RA.

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@gardeningjunkie yes everyone needs to wear a hat it keeps the heat in your body ,we lose our body heat if we dont wear a hat and want m socks in winter I lived in Pa and this was a must dont let your body get cold now in Ca.I don't need a hat so much for heat but to protect my eyes as I have M D so I wear a visor and sunglasses.

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I was diagnosed with Raynauds at a very young age. Preventing damage to tissue is very important. Wear gloves on chilly days and even when you are grocery shopping. You need to protect your fingers when you grab something cold or frozen. I usually have someone else grab the item for me. I also have a pair of heated gloves and booties for the chilly MN weather. My fingers and toes will turn a dark purple color and it is very painful! For some people…going on a medication that helps control blood pressure works….they dilate the blood vessels which allows for more blood flow to the area.

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@jleem @windwalker I totally agree, keeping fingers protected is hugely important and I also feel that keeping the torso warm and protected helps keep blood flowing to the fingers and toes. For me, once I start to feel the least amount of chill, my fingers turn paper white and lose feeling. I keep extra socks in the car, wear wool socks all through the chilly weather and wear leather, lined mittens all winter long. I keep an extra pair of gloves in the car to use when grocery shopping.

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Hi Laura @lauraj155, thank you for the private message. You mentioned you were trying to get an answer to your question — why do my feet turn shades of blue and also red and sometimes they look normal. They also can get very cold as well as hot. You were wondering if anyone with neuropathy have color and/or temperature changes and if it could be CRPS which is difficult to diagnose. You said you are waiting for a referral to see a new neurologist and I hope it can be figured out. I thought I would answer your message in this discussion where you can meet other members who have discussed similar symptoms.

You might be interested in reading the information here on Raynaud's Phenomenon on the Arthritis Foundation website. The symptoms described sound similar to what you mentioned in your private message:
https://www.arthritis.org/about-arthritis/types/raynauds-phenomenon/

Is your doctor trying to get a referral for you to see a new neurologist?

John

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@lauraj155 @johnbishop
Hello!
As I mentioned before, I have neuropathy, too. I don't know what kind, just that I have it. I will ask my doc when I see him in a couple of weeks.
However, I have issues with my toes swelling and turning a dark purple, especially when my feet are hanging down. They do not hurt. I've been to the vascular doctor for tests and everything was normal (except for a bit of aging). I've told the neurologist and neurosurgeon and neither seem concerned. Every time I bring it up to them, my hubby hushes me because he feels it is not their line of 'work.

Oh well, just another day in the life of me…….
Ronnie (GRANDMAr)

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@johnbishop

Hi Laura @lauraj155, thank you for the private message. You mentioned you were trying to get an answer to your question — why do my feet turn shades of blue and also red and sometimes they look normal. They also can get very cold as well as hot. You were wondering if anyone with neuropathy have color and/or temperature changes and if it could be CRPS which is difficult to diagnose. You said you are waiting for a referral to see a new neurologist and I hope it can be figured out. I thought I would answer your message in this discussion where you can meet other members who have discussed similar symptoms.

You might be interested in reading the information here on Raynaud's Phenomenon on the Arthritis Foundation website. The symptoms described sound similar to what you mentioned in your private message:
https://www.arthritis.org/about-arthritis/types/raynauds-phenomenon/

Is your doctor trying to get a referral for you to see a new neurologist?

John

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@johnbishop @grandmar, thanks so much John for your help and for posting my questions. Also, grandmar, sounds like you have similar issues as well. Getting to a new Neurologist soon and hope to figure things out. -Laura

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@lauraj155

@johnbishop @grandmar, thanks so much John for your help and for posting my questions. Also, grandmar, sounds like you have similar issues as well. Getting to a new Neurologist soon and hope to figure things out. -Laura

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@lauraj155
I wish you lots of luck!
My doctors are also looking for a more specific answer.
Ronnie (GRANDMAr)

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@grandmar

@lauraj155
I wish you lots of luck!
My doctors are also looking for a more specific answer.
Ronnie (GRANDMAr)

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@grandmar, yes my feet turn bluish purple especially when they are hanging down, whole foot including toes! No answers yet but finally getting referral to neurologist. Laura

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@lauraj155

@grandmar, yes my feet turn bluish purple especially when they are hanging down, whole foot including toes! No answers yet but finally getting referral to neurologist. Laura

Jump to this post

@lauraj155
Thank you.
Ronnie

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Many of you have interacted with @grandmar in this thread and throughout Connect. She is constantly there to offer support to you and share her life experiences.

In this week's Member Spotlight, learn more about what makes @grandmar tick, as well as her motto's for life.

Devoted grandma contends with chronic pain: Meet @grandmar: https://connect.mayoclinic.org/page/about-connect/newsfeed-post/devoted-grandma-contends-with-chronic-pain-meet-grandmar/

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