Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4145
Joined: Nov 18, 2016
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.
proudindian
@proudindian
@proudindian
Posts: 14
Joined: May 06, 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!!!!!
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4145
Joined: Nov 18, 2016
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!!!!!
@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!
Liked by John, Volunteer Mentor
barbarn
@barbarn
@barbarn
Posts: 123
Joined: Mar 25, 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!!!!!
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?
Liked by John, Volunteer Mentor
proudindian
@proudindian
@proudindian
Posts: 14
Joined: May 06, 2018
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.
Thanks Sandi, I will. Best to you!
Liked by Terri Martin, Volunteer Mentor
sandicam
@sandicam
@sandicam
Posts: 6
Joined: May 10, 2016
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.
All the best to you….keep in touch
Liked by Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4145
Joined: Nov 18, 2016
proudindian
@proudindian
@proudindian
Posts: 14
Joined: May 06, 2018
Thanks barbarn. I will try the long sleeved swim tees.
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4145
Joined: Nov 18, 2016
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.
@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.
proudindian
@proudindian
@proudindian
Posts: 14
Joined: May 06, 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.
peetiepie
@peetiepie
@peetiepie
Posts: 12
Joined: Aug 27, 2018
I have been diagnosed with raynauds and was given cialis to take to help blood circulation. Though the cialis did help slightly it gave me bad chest pains like something was sitting on my chest. So now I just thaw out in warm water every evening and sometimes during the day if I'm able to. I try to always have a blanket, jacket whenever I go somewhere that might be cold. I also wear a beanie almost everyday. My raynauds seems to be worse when I take my meds for a prolactinoma.
Liked by barbarn
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4145
Joined: Nov 18, 2016
I have been diagnosed with raynauds and was given cialis to take to help blood circulation. Though the cialis did help slightly it gave me bad chest pains like something was sitting on my chest. So now I just thaw out in warm water every evening and sometimes during the day if I'm able to. I try to always have a blanket, jacket whenever I go somewhere that might be cold. I also wear a beanie almost everyday. My raynauds seems to be worse when I take my meds for a prolactinoma.
@peetiepie Hi there. My daughter has severe Raynauds, but she feels like she is burning up all of the time. For years she refused to wear jackets even in snow. And wears sandals year round, even when it is 45 degrees out. Her Raynauds flares every day and looks like scaulding water has been poured on her. The redness throws off a lot of heat as well.
Liked by John, Volunteer Mentor
gardeningjunkie
@gardeningjunkie
@gardeningjunkie
Posts: 607
Joined: Aug 17, 2018
Being raised in a zone 9 I never even realized I had raynaud's until I took my first trip to the mountains in my 20's. My fingers and toes first turn red then pure white. The pain I can describe as having nails driven through your fingernails. I learned that snow skiing is not for me! Even good gloves won't keep me pain below 40! Even when active. Now at age 69 and living in a region with colder winters it is no worse but am always prepared. Like many I carry a pair of gloves and always bring a jacket (others mentioned keeping the core warm) to movie theaters and restaurants even in the summer if air conditioning is too cold. I have a pair of flexible soft leather gloves with rabbit hair lining which feel heavenly and I put on when shopping in produce isles. Water does trigger the loss of hand temp and wet produce can quickly turn my fingers white in a cool grocery. Then what can I do, basically nothing except hope the bathroom has warm water to run over my fingers. A surprisingly helpful way to warm up white toes, besides layers of blankets(which are surprisingly unhelpful once feet are white) or a heating pad is to wear a warm hat! Your body wants to keep the circulation in your brain #1 and if it has good blood flow it will send blood out to other areas. Also because I love to garden and stay out past my outdoor temp trigger points the fastest way to recover I have found is to put a washcloths in a microwave, heat till very warm, not scalding and wrap around fingers. This will get the blood flowing, first fingers will return from white to bright red and hurt like heck, then in a few minutes can return to flesh color and stop hurting.
I have read that those of us born with it have a genetic predisposition to having it and although painful and inconvenient it is not normally a significant health issue. For those who develop this later in life it is a signal that something else may be going on in your body like RA.
lioness
@lioness
@lioness
Posts: 7704
Joined: Jan 09, 2018
Being raised in a zone 9 I never even realized I had raynaud's until I took my first trip to the mountains in my 20's. My fingers and toes first turn red then pure white. The pain I can describe as having nails driven through your fingernails. I learned that snow skiing is not for me! Even good gloves won't keep me pain below 40! Even when active. Now at age 69 and living in a region with colder winters it is no worse but am always prepared. Like many I carry a pair of gloves and always bring a jacket (others mentioned keeping the core warm) to movie theaters and restaurants even in the summer if air conditioning is too cold. I have a pair of flexible soft leather gloves with rabbit hair lining which feel heavenly and I put on when shopping in produce isles. Water does trigger the loss of hand temp and wet produce can quickly turn my fingers white in a cool grocery. Then what can I do, basically nothing except hope the bathroom has warm water to run over my fingers. A surprisingly helpful way to warm up white toes, besides layers of blankets(which are surprisingly unhelpful once feet are white) or a heating pad is to wear a warm hat! Your body wants to keep the circulation in your brain #1 and if it has good blood flow it will send blood out to other areas. Also because I love to garden and stay out past my outdoor temp trigger points the fastest way to recover I have found is to put a washcloths in a microwave, heat till very warm, not scalding and wrap around fingers. This will get the blood flowing, first fingers will return from white to bright red and hurt like heck, then in a few minutes can return to flesh color and stop hurting.
I have read that those of us born with it have a genetic predisposition to having it and although painful and inconvenient it is not normally a significant health issue. For those who develop this later in life it is a signal that something else may be going on in your body like RA.
@gardeningjunkie yes everyone needs to wear a hat it keeps the heat in your body ,we lose our body heat if we dont wear a hat and want m socks in winter I lived in Pa and this was a must dont let your body get cold now in Ca.I don't need a hat so much for heat but to protect my eyes as I have M D so I wear a visor and sunglasses.
Liked by John, Volunteer Mentor
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 11014
Joined: Jul 23, 2014
Check out today's member spotlight and get an inside look at what inspires Terri.
– A Breath of Fresh Air: Meet @windwalker https://connect.mayoclinic.org/page/about-connect/newsfeed/a-breath-of-fresh-air-meet-windwalker/
Follow the About Connect page to read all the Member Spotlights: https://connect.mayoclinic.org/page/about-connect/
Liked by John, Volunteer Mentor
@sandicam
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…
Liked by Terri Martin, Volunteer Mentor