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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.

sandicam | @sandicam | 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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Dear Proud...on your next visit to see your doctor, ask him ( she ) about keeping your core warm...It does work..just today I went into an air conditioned store and took my sweater with me...

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proudindian | @proudindian | May 11, 2018

I can sleep in a room with the AC on 69 or 70 degrees with no problem. My problem is I am a preschool teacher; and we do a lot of water play. Myself and the kids get soaked from head to toe. Then comes the fun part; transitioning into the building! As soon as I enter the building, it feels like someone threw acid on me. Same is true with going to the beach and having to get into the car. Any ideas anyone? As I am heading to Hilton Head today. Everyone enjoy your weekend!!!!!

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 11, 2018
In reply to @proudindian "I can sleep in a room with the AC on 69 or 70 degrees with no..." + (show)
@proudindian

I can sleep in a room with the AC on 69 or 70 degrees with no problem. My problem is I am a preschool teacher; and we do a lot of water play. Myself and the kids get soaked from head to toe. Then comes the fun part; transitioning into the building! As soon as I enter the building, it feels like someone threw acid on me. Same is true with going to the beach and having to get into the car. Any ideas anyone? As I am heading to Hilton Head today. Everyone enjoy your weekend!!!!!

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@proudindian Perhaps have a dry towel and clothes handy for a quick change or a
warm fleece jacket to throw on right away. Unfortunately, there is not a lot they can do for Raynaud's. I hope ypu have a great weekend in HH!

REPLY
barbarn | @barbarn | May 11, 2018
In reply to @proudindian "I can sleep in a room with the AC on 69 or 70 degrees with no..." + (show)
@proudindian

I can sleep in a room with the AC on 69 or 70 degrees with no problem. My problem is I am a preschool teacher; and we do a lot of water play. Myself and the kids get soaked from head to toe. Then comes the fun part; transitioning into the building! As soon as I enter the building, it feels like someone threw acid on me. Same is true with going to the beach and having to get into the car. Any ideas anyone? As I am heading to Hilton Head today. Everyone enjoy your weekend!!!!!

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I noticed in the new Land's End catalog they have long sleeved "swim tees" that apparently are for getting wet, would that help when you go into the building? - and, also noticed Phil Mickelson (sp?) playing golf in a long sleeved shirt (in tournament in FL) which I presume is probably one of those sunscreen shirts - maybe that would be too lightweight?

REPLY
proudindian | @proudindian | May 12, 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.

Jump to this post

Thanks Sandi, I will. Best to you!

REPLY
1 reply
sandicam | @sandicam | May 12, 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.

Jump to this post

All the best to you....keep in touch

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 14, 2018
In reply to @mrlncrvn "Heat locker socks from walgreens helped me. Massaged lotion on my feet, then immediately put the..." + (show)
@mrlncrvn

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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@mrlncrvn That tip sounds like a good idea. Thank you!

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proudindian | @proudindian | May 29, 2018

Thanks barbarn. I will try the long sleeved swim tees.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 1, 2018
In reply to @proudindian "Hi Windwalker. I don't know which one I had first; lupus or Reynaurds, but now I..." + (show)
@proudindian

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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@proudindian Yes, my daughter has it very bad. I am going to post pics of it as soon as she sends them to me. I have never seen anything lile ot, not even online.

REPLY
proudindian | @proudindian | Jun 6, 2018

This may be a little of the subject, but the last segment on "The View" last week was interesting. I believe the company is Solarflex; they have a line of swimwear and beach hats that have UVA protectant woven in the material. Don't know how much protection that gives, but they are selling like hot cakes at LL Bean.

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