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Raynaud's Syndrome

Posted by @windwalker, Fri, Apr 27 11:03am

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.

REPLY

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?

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.

@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?

@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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@oregongirl Hello. My daughter has Raynaud's also. Her's is pretty bad. She changes colors on a daily basis and at times looks like scoulding water has been poured all over her body. She is very self concious about it and has spent too many hours in the tanning bed trying to mask it. Her body seems to lack a 'thermo-stat'. By that, I mean that she feels like she is burning up no matter what time of the year it may be. Does your daughter have that symptom as well?

@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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My beautiful daughter and I mean mean beautiful, has blotches of changing color. She is naturally dark in color. A tan color. But, she has a wonderful husband and 2 children grown
She worked hard and refuses to believe she had all these horrible things. I love her so much.

@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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What is chilblains. Omg do I have to watch my daughter for that also?? She won't come on here because she won't admit to her illness.

@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 didn't know there is primary or secondary Raynaud's. I am on a sharp learning curve here. I am 69 and my mother also was told she had this disease. My symptoms were diagnosed years ago by our primary physician, Both of us experienced cold chills and very wrinkled hands. I'm very interested to hear more since I think have other related issues. Thank you for starting this discussion.

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.

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.

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

@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?

@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.

@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?

@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 .

@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.

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