Raynaud's Syndrome

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.

@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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@toni68 Hi Toni Ann. Great hearing from you. Safety in numbers! I too feel a lot better with the comradery on Connect. How are you faring with Rayaud's and MAC?

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@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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@toni68 Good Lord Toni, you have had a lot on your plate healthwise! I didn't mean to minimize your other issues by asking only about the mac and raynauds. Most importantly, have you got your cancer gone? Are you doing ok now?

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@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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Hi Toni Ann, I'll be 68 yo in a couple months. Sometimes I feel very much alone fighting the good fight. It seems the older we get the less we have as a support group. But, these interactions are very helpful.
I'm new to connect. So far, everybody seems very helpful and reassuring. I'm glad that you are feeling less stressed. Getting old is not for sissies. Can't remember who said that, but now I understand! Hope you have a good evening!

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@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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@mrlncrvn Hello. Welcome to Connect. Ha! I heard a similar saying "you gotta be tough to get old".

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@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.

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@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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@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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@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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@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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@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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@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

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@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?

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