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.

@leannestork

Hi there from Australia. My Heart Surgeon knew i have Lupus and Fibromyalgia but due to my freezing hands and feet in the middle of our summer suggest i might also have this Title as well. I could not be bothered going to another specialist because at the end of the day we are still just treating the symptoms of Auto Immune Disease' that do not have a cure. I am most interested in hearing how everyone deals with this, and what makes some days worse than others. Take Care Everyone

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@gently

bruizersmom,
Raynaud's can be the result of an autoimmune disease, or it can be primary a disease on it own.
I missed your earlier response. Frostbite can happen without Raynaud's or secondary to Raynaud's, so frostbite can't give you an indication of autoimmune status.

Raynaud's is commonly associated with lupus.
I am sorry about your toes. Do they recover completely from frostbite.
I think I intended to ask if you were employing any medication.
I get the white fingertips when working with cold food--cutting frozen fruit or very cold chicken. But not when walking in freezing temperatures.

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Yesterday I visited a Rheumatologist for the first time (a referral from my podiatrist). She said Raynaud's isn't all that uncommon, was a bit worried about the dark bruise on one purple toe, is sending me for lab work due to repeated positive ANA results on pevious reports. Yes, the frostbite went away..that was eons ago, or so it feels: 1970's.
She's also put in a request to up my Cymbalta to an effective dosage, says it's very good for pain from osteoarthritis and Raynaud's (Nobody EVER told me that before!!) and has even given me permission for medical marijuana, if needed.
I started having continuous foot colness and pain while I was livin g in South Florida!! CT is a horror for feet and hands. I can't find any truly insulated boots...they say they are, but they're just sitting under my bed collecting dust.... Anyone with suggestions?

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Hi I also have severe reynoss and was diagnosed with MCTD 3 days ago. My toes had bad ulcers in them I could barely walk. My Dr gave m Niagara 3 times a day for blood flow it work’s pretty well. I am a 69 yr old female and trying to digest this.. how’s you’re daughters raynods now

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Yes I would be interested in discussion on Raynaud as my boyfriend suffers from it

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My feet and hands are ice cold all the time. Not sure what it is? Is it Raynauds, circulation or anxiety?

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I have had Raynauds for over 24 years, along with an autoimmune disease. When it started my hands would turn blue with the cold and when I got nervous and anxious. Saw rheumatologist and got diagnosed. Start with intervention early. Keep hands warm with wearing gloves. I wear those knit magic gloves at night and keep them around in summer and winter because of air conditioning. Also keep yor hands moisturized especially in winter so you don't get cracks and ulcers there is alot on computer on how to keep from making it worse. I almost had to have a finger amputation due to a cut that got infected. Must do preventative measures to keep from hands getting worse.

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My daughter was initially diagnosed with Raynadus Syndrome at 3 years old, she is now 5 years old. I would like to hear from other parents with similar experiences... their studies are oriented toward unconfirmed Fibroblastic Rheumatism. We live in Massachusetts and of course, the weather is not our ally.

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@flowercita

My daughter was initially diagnosed with Raynadus Syndrome at 3 years old, she is now 5 years old. I would like to hear from other parents with similar experiences... their studies are oriented toward unconfirmed Fibroblastic Rheumatism. We live in Massachusetts and of course, the weather is not our ally.

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Welcome to Mayo Clinic Connect, @flowercita ! I’m so glad you found this site. I’m sure members. Will see your post and respond soon. Welcome!

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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 am relatively new to Raynauds, and recently learn it is secondary. I am trying to learn about which of my other symptoms may be related to the Raynauds. I have lots of foot,
leg cramping.

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@weismanna

I am relatively new to Raynauds, and recently learn it is secondary. I am trying to learn about which of my other symptoms may be related to the Raynauds. I have lots of foot,
leg cramping.

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@weismanna Welcome to Mayo Clinic Connect! I’ so glad you’re here and found this site.
You’ve asked about Raynaud’s so I’ve included what Mayo Clinic says.
https://www.mayoclinic.org/diseases-conditions/raynauds-disease/symptoms-causes/syc-20363571
What other symptoms do you have that make you suspicious about Raynauds. I’m sure our knowledgeable members can answer most of your questions.
You recently learned that Raynaud’s is secondary. What other autoimmune disease do you have?

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