Mayo Clinic Connect
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.
Liked by John, Volunteer Mentor, Kanaaz Pereira, Connect Moderator
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?
Liked by John, Volunteer Mentor
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
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
@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?
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
Liked by Terri Martin, Volunteer Mentor
I don'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..
Liked by Terri Martin, Volunteer Mentor, lioness
@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?
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
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.
From what you,be said has she seen a endocrinologist? He will look at her hormones. To @windwalker
I live in Florida. One would think that it's the ideal climate for raynauds. But, it isn't. Going in an out of air conditioned building and cars are problematic. I keep gloves everywhere and wear long sleeve sweaters no matter what the temperature is. Heat locker gloves from Walgreens were wonderful during the winter. Also, moisturizing my hands seems to help. Apply a dab of Coconut oil first then layer it with lotion. Good luck!
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.
Liked by Kanaaz Pereira, Connect Moderator, Terri Martin, Volunteer Mentor, lioness
Has anyone noticed the different things we have found to relieve us some of our pain is old time remedies ,gloves,pickle juice making a cozy place for us ,baking soda,Epsom salts,vinegar just a plain hot shower all things we have known about all through our lives because we have grown in our knowledge ,that has made us strong women ,since we all have been nurtures to our kids,husband's ,sick people ,etc. We are at the end ready to go home but we have this devil ,pain, don't let it take us we can overcome ,we are all strong ,God fearing women He will get us through Bless us all.
have any of you used Magnesium to help?
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.
Well i am heading back to MCV tomorrow morning. I normally go every 3 months for bloodwork for my lupus. I went as scheduled last month and they called me back in. That cant be good. This will be a long night.
@lioness Thank you for the tip. I will mention it to my daughter. -Terri
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?
@lauren123 Hi Lauren. Yes, there are two kinds of Raynaud's. There is PRIMARY which is only Raynaud's, which is a circulatory disorder; and then there is SECONDARY which means that there is another disease(s) that commonly co-exist with Raynaud's. The other common diseases than can accompany Raynaud's are Lupus and Scleroderma. These are autoimmune diseases and can also include RA (arthritis) and Sjogren's Syndrome. Others may jump in and speak of their experiences with SECONDARY Raynaud's, but you can Google lots of info also.
@lioness My daughter's hands, feet and knees turn white to purple every day no matter the weather. For some odd reason; every day at precisely 4:00 p.m. her ears turn bright red and burn horribly; also, her chest and throat break out in big red welts. Along with that, her arms look like scalding water had been poured on her. We have lots of photos of it. It is so bizaar.
@lioness I think that for the most part, cold does bring on the symptoms for most people with Raynaud's. I think my daughter has an exceptionally severe case of it though.
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