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.

Profile picture for suetex @suetex

I will be glad to give tips, such as they are, even 'though I don't have Lupus or RA. (Not yet, anyway.) I guess Sjogren's counts as it can do just about anything...
First and foremost, be kind to yourself. Need a nap? Take one. The dishes will wait. Read about your condition as much as you can. Don't be afraid to ask questions. Always learn about your drugs before you take them. Drs. and pharmacists are human and mostly overworked. And (hard to do if you are like me) ask for help when you need it.

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@suetex
The courage for some joining this feed should be commended for sharing their story as they are scared, distraught, and just trying to absorb how much their life has just changed. Sorry to hear about your comment about drs and pharmacists as this has thankfully not been my experience. Also, reading up on medications can be frightening on own, less frightening when first discussed with dr why would need this drug, the benefits of taking this drug, what to expect from this drug, over the possible side effects. Please do not be afraid to ask questions when at dr and make a list of questions at home once you have absorbed all discussed at consult, then call for a Telehealth appointment for additional questions, or better yet, if you can sign up for “my chart” (on phone or laptop) with drs office where you can message the dr directly any questions who respond quicker than waiting for next appointment.

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@thomps26 Welcome to Mayo Clinic Connect!
Are you currently getting treatment for the lupus or RA? I’m asking a few other members if they would talk to you about your diseases. @sarastewart. @andid @suetex @phxbarb

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@becsbuddy Yes I take Enbrel which has it under control pretty well. I am thankful for this med which is given to me by the Foundation, free of charge.

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Profile picture for sunshine67 @sunshine67

@suetex
The courage for some joining this feed should be commended for sharing their story as they are scared, distraught, and just trying to absorb how much their life has just changed. Sorry to hear about your comment about drs and pharmacists as this has thankfully not been my experience. Also, reading up on medications can be frightening on own, less frightening when first discussed with dr why would need this drug, the benefits of taking this drug, what to expect from this drug, over the possible side effects. Please do not be afraid to ask questions when at dr and make a list of questions at home once you have absorbed all discussed at consult, then call for a Telehealth appointment for additional questions, or better yet, if you can sign up for “my chart” (on phone or laptop) with drs office where you can message the dr directly any questions who respond quicker than waiting for next appointment.

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@sunshine67
You are absolutely correct on all counts. Good advice.

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@suetex Perfect! Just what I wanted

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@becsbuddy
A few months ago I read your 2021 post about the Spoon Theory and my health has improved. Lifestyle changes are not easy but it works. If I don't plan my day well and pay close attention to how I feel there are consequences.
Thank you!

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Profile picture for texasblooms @texasblooms

@becsbuddy
A few months ago I read your 2021 post about the Spoon Theory and my health has improved. Lifestyle changes are not easy but it works. If I don't plan my day well and pay close attention to how I feel there are consequences.
Thank you!

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@texasblooms That’s so wonderful to hear! Now, me, I can’t seem to plan my days well. Some days I overdo and other days I just get lost in what I’m doing and time goes by too quickly. Or I get too confused and then hopelessly lost. I need to pay better attention!

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Structuring my day, realizing when something is not right, and forcing myself to go home has helped a lot.

Still, everyday is a surprise. Last Sunday I was at a friend's house when a flare started and I knew it was getting bad fast. My sudden exit was not well received.

Last week a wonderful Physical Therapist told me I must care of myself, it takes two to three days to recover from a bad flare. Don't push yourself through recovery. You have a small gas tank and you don't want it to go below 1/4 of a tank. It's comforting when a medical professional understands me.

I have flare phobia and am trying to find a balance and feel safe. I don't want to be too cautious and not have a life.

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Profile picture for thomps26 @thomps26

Hi, thank you! That would be nice

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@thomps26 I am taking 200mg of Solendac and 200mg of Hydroxicloriquine. Both only help me a bit….

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