1. < Autoimmune Diseases
Mentor

Raynaud's Syndrome: Anyone want to talk about Raynaud’s?

Posted by Terri Martin, Volunteer Mentor @windwalker, Apr 27, 2018

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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 8, 2018
In reply to @windwalker "@ccubed Like many syndromes and diseases; there are varying degrees of it. I am glad that..." + (show)
@windwalker

@ccubed Like many syndromes and diseases; there are varying degrees of it. I am glad that your's isn't very bad. Did your's calm down as you got oldet?

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@ccubed That is good to know that sometimes a change in climate helps. Where in Az do you live? I lived in Tucson for 20 yrs. The altitude was hard on my lungs and I have since moved to a town in S.C. and am doing better here at sea level.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 8, 2018
In reply to @ggopher "I’m in. A quick read of the posts puts me right into this group. I’m in..." + (show)
@ggopher

I’m in. A quick read of the posts puts me right into this group. I’m in Texas and carry a sweater and often gloves everywhere I go. People think I’m nuts. Good thing I’m 73 and some eccentricity is expected. Stores and even church cause my hands to go frozen and burn because they are so cold. I’ve also got Parkinson’s and a few other things and no idea yet if any of them are related. I’ll ask at my next Dr visit but I would assume not or it would have been mentioned before.

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@hgopher I don't know, I think they are learning more about autoimmune diseases and are finding many are related. I hope you will come back on and share your doctor's thoughts about it. Good luck with the dr visit!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 8, 2018
In reply to @grandmapark "have any of you used Magnesium to help?" + (show)
@grandmapark

have any of you used Magnesium to help?

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@grandmapark , I had read that magnesium is good for building up your immune system. I bought a bottle of it and take it every other day.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 8, 2018
In reply to @andilynn "Hello, I’m sorry your daughter has to deal with this syndrome. Hopefully, she’ll learn some things..." + (show)
@andilynn

Hello,
I’m sorry your daughter has to deal with this syndrome. Hopefully, she’ll learn some things to help manage it. I was diagnosed with Secondary Raynaud’s stemming from lymphoma. It’s mostly in three fingers on my right hand at this point. It started in one finger last summer, then spread. Cold weather makes it worse. My neurologist suggested taking beta-blockers next winter to help. The fingers start hurting, then turn white, then blue. Sometimes the blue stays for a few days. If I’m at home, I’ll wrap a warm heating pad on the hand for awhile to help settle it down. Sometimes it’s mildly painful, other times more severe.
I hope your daughter can get some relief.
~ Andilynn

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@andilynn Thank you. I had read online that it is a good idea to swing your arms regularly to make your blood get forced down into the small capillaries by centrifugal force. Done on a regular basis is supposed to stretch the narrowed capillaries.

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lioness | @lioness | May 8, 2018
In reply to @windwalker "@ccubed Like many syndromes and diseases; there are varying degrees of it. I am glad that..." + (show)
@windwalker

@ccubed Like many syndromes and diseases; there are varying degrees of it. I am glad that your's isn't very bad. Did your's calm down as you got oldet?

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I had hands and feet cold in Pa moved to Calif now just cold feet but the lack of humidity has helped me with my fibromyalgia and arthritis here

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lioness | @lioness | May 8, 2018
In reply to @grandmapark "have any of you used Magnesium to help?" + (show)
@grandmapark

have any of you used Magnesium to help?

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I have used magnesium for along time it helps my fibromyalgia I think it is good for us as we age

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lioness | @lioness | May 8, 2018
In reply to @grandmapark "have any of you used Magnesium to help?" + (show)
@grandmapark

have any of you used Magnesium to help?

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Good for you ,track how you feel it sure has made a difference with my fibromyalgia

REPLY
lioness | @lioness | May 8, 2018
In reply to @andilynn "Hello, I’m sorry your daughter has to deal with this syndrome. Hopefully, she’ll learn some things..." + (show)
@andilynn

Hello,
I’m sorry your daughter has to deal with this syndrome. Hopefully, she’ll learn some things to help manage it. I was diagnosed with Secondary Raynaud’s stemming from lymphoma. It’s mostly in three fingers on my right hand at this point. It started in one finger last summer, then spread. Cold weather makes it worse. My neurologist suggested taking beta-blockers next winter to help. The fingers start hurting, then turn white, then blue. Sometimes the blue stays for a few days. If I’m at home, I’ll wrap a warm heating pad on the hand for awhile to help settle it down. Sometimes it’s mildly painful, other times more severe.
I hope your daughter can get some relief.
~ Andilynn

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Gloves when out of in that's what I have found but my feet ,that's another story ,even socks don't help much any suggestions?

REPLY
mrlncrvn | @mrlncrvn | May 9, 2018

Heat locker socks from walgreens helped me. Massaged lotion on my feet, then immediately put the socks on my feet. I also folded a blanket in half and laid it over the bottom 1/3 of my bed. Good luck!

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1 reply
mrlncrvn | @mrlncrvn | May 9, 2018
In reply to @andilynn "Hello, I’m sorry your daughter has to deal with this syndrome. Hopefully, she’ll learn some things..." + (show)
@andilynn

Hello,
I’m sorry your daughter has to deal with this syndrome. Hopefully, she’ll learn some things to help manage it. I was diagnosed with Secondary Raynaud’s stemming from lymphoma. It’s mostly in three fingers on my right hand at this point. It started in one finger last summer, then spread. Cold weather makes it worse. My neurologist suggested taking beta-blockers next winter to help. The fingers start hurting, then turn white, then blue. Sometimes the blue stays for a few days. If I’m at home, I’ll wrap a warm heating pad on the hand for awhile to help settle it down. Sometimes it’s mildly painful, other times more severe.
I hope your daughter can get some relief.
~ Andilynn

Jump to this post

that's a good idea. I also do hand exercises. Helps loosen them and gets circulation going. Pumping each finger from the bottom knuckle up to the tips gets the blood flowing for me.

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