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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 6, 2018

@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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5 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 6, 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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@sandicam Thank you for responding. I am pretty sure my daughter has RA also. She has complained about aches and pains for years; especially in her knees.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 6, 2018
In reply to @proudindian "I have a difficult time during the summer, or anytime the AC is on. Taking a..." + (show)
@proudindian

I have a difficult time during the summer, or anytime the AC is on. Taking a shower is an event. As soon as i get out the shower my entire body feels like someone poured acid on me. The cold air burns.

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@proudindian Hi there, and welcome to the Connect group. That sounds aweful that showering is a difficult experience. Would a space heater help?

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lioness | @lioness | May 6, 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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So sorry for your daughter and you we all have our crosses to bear I know it's hard physically but be strong as I know you are .

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 6, 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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@lioness Thank you.

REPLY
lioness | @lioness | May 6, 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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Alot of people here in Calif at our building Sr apt. Where gloves and sweat suits with Reyneards?

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lioness | @lioness | May 6, 2018
In reply to @ccubed "I was diagnosed when I was younger because my fingers and toes would blanch when I..." + (show)
@ccubed

I was diagnosed when I was younger because my fingers and toes would blanch when I was cold. I never have had any other problems. They had said I had syndrome so maybe didn't really have it as these side effects above seem quite severe

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Sounds to me like you have Reynauds Syndrome if your feet @hands are cold and then white put gloves on see if that helps hands

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lioness | @lioness | May 6, 2018
In reply to @kanaazpereira "@dash99999 @rpswanson1 @melissa23 have also mentioned Raynaud's Syndrome, and I hope they will join this discussion..." + (show)
@kanaazpereira

@dash99999 @rpswanson1 @melissa23 have also mentioned Raynaud's Syndrome, and I hope they will join this discussion and share their insights. @kariulrich, I recall you mentioning Raynaud's and developing chilblains a while ago?

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My understanding is it's when your skin gets cold but if you live in Texas I don't think you have to worry. I could be wrong but that's my understanding

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sandicam | @sandicam | May 6, 2018
In reply to @kanaazpereira "@dash99999 @rpswanson1 @melissa23 have also mentioned Raynaud's Syndrome, and I hope they will join this discussion..." + (show)
@kanaazpereira

@dash99999 @rpswanson1 @melissa23 have also mentioned Raynaud's Syndrome, and I hope they will join this discussion and share their insights. @kariulrich, I recall you mentioning Raynaud's and developing chilblains a while ago?

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I don&apos;t find that to be true...in my case anyway..When I am in Florida and go to an air conditioned store I have a flair up. Resolved..wear a sweater or a jacket and keep the core of your body warm..

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ccubed | @ccubed | May 6, 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 moved out of Mn to Az and it made a lot of difference. I still have cold feet at nite per my husband..I haven’t had blanching dice I got away from snow and cold

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