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.

@becsbuddy

@rachael1357 that’s great that you’ve gotten such a positive response to sidenafil! How long have you been on it and what effects have you had that ‘changed your life’?

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I have been on it about three years. I can shop in the freezer section now and even go outside in the winter without my fingers and toes turning dusky color and numb.

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@colleenyoung

Thanks for getting this discussion group dedicated to Raynaud's Syndrome started, @windwalker.

I'd like to invite @thomasesmom @lila25 @lauren123 @bswtwa @poppy73 @denia @olga1dubrovsky2_babies and @kdubois to join the group. Why not start by introducing yourself. Do you have primary or secondary Raynaud's? How do you help prevent an attack? What do you do to manage it?

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I’ve been in this party for over 40 years and it sucks

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@hi2l

Doctors had diagnosed me wth Raynaud's for a long time. When I was scheduled for surgery on my shoulder the pre-surgery bloodwork showed a very low platelet count. My surgery was cancelled, and I was referred to a hematologist. I had a bone marrow biopsy and was told I had ITP, MGUS and Cold Agglutinin Disease or CAD. When I'm cold CAD causes antibodies to attack red blood cells and was the reason for my blue fingers when cold. I was told it is very rare and there is no cure.

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Doesn’t seem like there is anything that I get that does have a cure

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@marilynredder2367

I have had raynauds since 25. I am 80. Have developed several other autoimmune diseases. There was no medicine in my day. I just kept warm and defrosted hands and feet when coming in from the cold. I am now on blood thinners for a PE and DVT and am much warmer. I also live in Florida. My grandson has inherited raynauds. He moved from Jersey to SC. Sorry I’m not much help. But I made it to 80. 😊

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I love your attitude I’m not sure at 63 that I can take another 20 years but you give me hope
I need to move

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There are no real cures for auto immune diseases. We just do our best to keep our heads above board. There is always worse right

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@janeamartin

I love your attitude I’m not sure at 63 that I can take another 20 years but you give me hope
I need to move

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Yes that’s the key keep moving. I cannot begin to tell you how many other autoimmune diseases I live with. I just know I’m not ready to leave this life at the moment. Every day is a new beginning and if you get a few good days that’s a good thing.

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@janeamartin

Doesn’t seem like there is anything that I get that does have a cure

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Jane, what helps you cope with multiple conditions for which there are no cures?

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@colleenyoung

Jane, what helps you cope with multiple conditions for which there are no cures?

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I wish I could say I had the answer but faith and family are what I hang on to I’ve had many dark days😢

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@marilynredder2367

Yes that’s the key keep moving. I cannot begin to tell you how many other autoimmune diseases I live with. I just know I’m not ready to leave this life at the moment. Every day is a new beginning and if you get a few good days that’s a good thing.

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I am doing well for 7 years on biologicals. I’m not complaining as there are so many others who do not get any relief from the pain and limitations.
When the flares happen, well it’s my turn.
The hardest symptoms to explain are looking ok, but in serious pain and what I call “hitting the wall”, this is when in a few moments I must lay down immediately. After a nap if 20 minutes to 2 hours I’m back to my normal..
My husband can just look at me and say “it’s the wall huh?”.
Break time! I love that he understands and supports me.
Support is primal to feel you best and being encouraged.
Find that person family or friend or a support group, don’t do this alone.
Best to all.❤️

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I am thrilled to have just found this group. I was diagnosed with Raynauds two years ago by my podiatrist. After reading up on it, I believe I have been living with it for decades and never knew it was an autoimmune disease. The freezing pain in my toes and fingers is the worst, it will sometimes radiate up my legs and arms if I cannot source warmth to stop it. the discoloration has been especially bad in my toes. I wear wool socks 365 days a year, and I always have a hoodie and gloves in my car or at work no matter what season it is. I get especially cold when I lay down to sleep at night and sometimes I even sleep with my gloves on. One thing that has helped slow down the symptoms for me is to completely change my diet to avoid all inflammatory foods, especially anything with sugar or grain of any kind in it. The Raynauds is still with me, but symptoms became far more manageable when I made those changes. I HATE shopping in the refridgerated section for anything at the grocery store! that is a painful experience. For pain management, I use topical treatments: solanpas patches cut in small strips to wrap my toes, or voltaren ointment, as I will not take drugs.

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