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.

@laurie6

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

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I wish you all the best!

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My toes goes numb & the bottom of my feet will turn red/blue no matter on the temperature outside. If there's a slight breeze outside, I will wear fingerless gloves. My daughter has it too. I was told there's not much I could do so I deal with it.

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@grandma70

My toes goes numb & the bottom of my feet will turn red/blue no matter on the temperature outside. If there's a slight breeze outside, I will wear fingerless gloves. My daughter has it too. I was told there's not much I could do so I deal with it.

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@grandma70 I’m really sorry to hear that both you and your granddaughter have Raynaud's. It’s a tough one to deal with. I have a simpler case of Raynaud’s but it’s still a big problem in the winter. I added this site with Mayo Clinic’s information and treatment. It says that there IS treatment!
https://www.mayoclinic.org/diseases-conditions/raynauds-disease/symptoms-causes/syc-20363571
Read through the other responses and see what others have been able to do.
Let me know if you find something that works. Can you do that?

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@becsbuddy

@grandma70 I’m really sorry to hear that both you and your granddaughter have Raynaud's. It’s a tough one to deal with. I have a simpler case of Raynaud’s but it’s still a big problem in the winter. I added this site with Mayo Clinic’s information and treatment. It says that there IS treatment!
https://www.mayoclinic.org/diseases-conditions/raynauds-disease/symptoms-causes/syc-20363571
Read through the other responses and see what others have been able to do.
Let me know if you find something that works. Can you do that?

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Thanks for the info. An Intergrative dr told me that yes, Viagra can be used but at the time there wasn't much success with the drug. As for the blood pressure meds- I'm concerned about lowering my bp even lower than it already is. Acupuncture is a possibility.

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Honestly it has no end so whenever she can move to a warm climate thats when it will end. In Florida…..and my feet and hands are utterly happy finally!!!

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I was strikened with Raynouds when I developed Scleraderma sixty years ago in Minnasota. I wore heavy wool socks and gloves particularly when I grocery shopped and needed anything in the freezer section. I now live in Arizona and need the wool socks and gloves only during the worst of our winter. Good luck.

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For years I thought I had Raynaud's but after finding out I had to cancel a scheduled surgery because my blood platelets were too low, surgery was not possible. I was referred to a hematologist for treatment. I had a bone biopsy to confirm an autoimmune disease called ITP. In addition, they found I also had MGUS and CAD (Cold Agglutin Disease). The CAD is a condition where my immune system attacks red blood cell when I am cold. My fingers and feet turn white or blue and sting or become numb. CAD is fairly rare and can easily be misdiagnosed as Raynaud's.

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I was offered a bone biopsy as well but then they have zero treatment options available. So it would be for curiosity/confirmation of my raynauds and anemia and kidney disease.

So they CAN do a biopsy.

I’m too unwell to qualify for treatments and I’m actually still quite functional, having been adapting to these illnesses I was told are absurd and I’m a hypochondriac.

Nobody has asked or discussed disability options, but I do not LOOK disabled besides the drastic weight loss and my boyfriend ran like hell and several other friends prefer not be around someone so thin and bruised (and always cold or hot) and incredibly clumsy.

Arizona is the best option for surviving, probably but my mom picked California and I’m her caregiver on my better days.

Best wishes, friends, 🙏

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@grandma70 both my feet do the red, white, and blue colors too. I call them my patriotic feet!

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I have had for many years
It continues to get worse.
I have many things to deal
With, I cannot do. I live alone so everyone assumes you are ok? My hands turn color and get numb.

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