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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.

mrlncrvn | @mrlncrvn | May 9, 2018
In reply to @oregongirl "My daughter was diagnosed when she was about 15. As she grew older she tried to..." + (show)
@oregongirl

My daughter was diagnosed when she was about 15. As she grew older she tried to convince herself that she did not have it. Just about then, she is now also diagnosed with RA. She is 52. She is faithful about exercise and her eating habits. I do not know how she does it, but not take anything other than Tylonl. She is SO strong.

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I looked it up on the net. It was Bette Davis who said, "Getting old ain't for sissies." I think she knew a thing or two!

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barbarn | @barbarn | 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

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An electric blanket or heated mattress pad helps so much at night, just make sure , if you get one, that the heated part goes clear to the foot. Also, wool socks. My chiropractor told me that heating your core (holding the heating pad next to your chest) was important when using an ice pack - I suppose it would work the same with Reynauds.

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lioness | @lioness | May 9, 2018

You sound like me On my feet I'll be wearing socks in summer my feet are the only ones that get cold

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lioness | @lioness | May 9, 2018
In reply to @oregongirl "My daughter was diagnosed when she was about 15. As she grew older she tried to..." + (show)
@oregongirl

My daughter was diagnosed when she was about 15. As she grew older she tried to convince herself that she did not have it. Just about then, she is now also diagnosed with RA. She is 52. She is faithful about exercise and her eating habits. I do not know how she does it, but not take anything other than Tylonl. She is SO strong.

Jump to this post

Yes she did and. Ant it the truth

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 9, 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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@lioness Funny that you mentioned that the lower humidity in Ca helped with the arthritis. I found that when I moved to Az when I was 32 yrs old; my arthritis went away totally and permanantly. I had it bad in my knees, elbows and hips from age 14 until I moved to the desert.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | 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

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@lioness How about putting a heating pad on your feet. Sometimes they just need a kickstart to become warm. I do not have Raunaud's, but it works on my cold feet.

REPLY
lioness | @lioness | May 9, 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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Back east I could tell you a day ahead cold weather or rain was coming but even the fibro is better out here for me ,on the other hand I still have allergies ,now to those trees with purple flowers

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lioness | @lioness | 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

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Thanks I will usually a hot shower will do it

REPLY
proudindian | @proudindian | May 10, 2018

Hi Windwalker. I don't know which one I had first; lupus or Reynaurds, but now I know it is secondary since I have both. I didn't realize Heather's is soo bad.

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1 reply
proudindian | @proudindian | May 10, 2018
In reply to @sandicam "I have had Reynard for years..until i.mentioned it to my arthritis doctor nothing was ever done..." + (show)
@sandicam

I have had Reynard for years..until i.mentioned it to my arthritis doctor nothing was ever done about it. I also have RA which they say is associated with reynauds. I read up.on it all the time....Air conditioning when I'm out in a store brings it on to the point that I have to bring a heavy sweater and or leave the store. Finally I found that if you keep your core ( which is your chest) warm in AC it helps immensely. I take nothing to control it. My extremities turn pure white and painful. I have fallen thru the cracks with my Arthritis doctor.In today's world you have to be in charge of your own health and the doctor gets paid for your time.in doing so...Something wrong with this picture.

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Thanks Sandycam! I must try to remember to keep my core warm. That is advice I had not heard. I just went to the MCV clinic two days ago for blood work. I am required to go every 3 months. They are treating me for the Lupus, but concerning the Reynaurds, they basically tell me good luck!

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