Learn how to use Mayo Clinic Connect
Request an Appointment
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.
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.
Jump to this post
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.
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.
@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.
@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?
@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.
Teri This is strange I know you,ve had her to her Dr.I would run the gamet first I'd take her to endocrinologist the cardiologist keep me posted. Good luck also a rheumatologist find the best ones for your daughter
I’m sorry your daughter has to deal with this syndrome. Hopefully, she’ll learn some things to help manage it. I was diagnosed with Secondary Raynaud’s stemming from lymphoma. It’s mostly in three fingers on my right hand at this point. It started in one finger last summer, then spread. Cold weather makes it worse. My neurologist suggested taking beta-blockers next winter to help. The fingers start hurting, then turn white, then blue. Sometimes the blue stays for a few days. If I’m at home, I’ll wrap a warm heating pad on the hand for awhile to help settle it down. Sometimes it’s mildly painful, other times more severe.
I hope your daughter can get some relief.
I had come down with similar symptoms including other things they said I had. I found out one issue was an allergic reaction to a prescription they gave me which was bactrin which is a statin antibiotic. I discovered this when I stopped it as I was taking 3 times a week to prevent lung infections. None of the specialists caught it and I showed and told them all about the inflammation, hives, peeling sking…… They have a tendency to blame skin issues on autoimmune cases. They all have similar symptoms. It is a difficult field for them and not enough research is done to really rule out reactions to the prescriptions they give you for additional things that come up as you go through various reactions to chemicals, food, vitamins and prescriptions. I had to document and really watch effects of everything I ate or took, including supplements. I'm much better now as I actually started discontinuing prescriptions such as plaquenil and gaberpentin (sp) as they are band aids for pain and tylenol works when I do have pain issues. Recently I discontinued Cellcept and so far (after several months no negative effect (I slowly reduced to zero). I did tell my doctors what I was going to do as I can always start them up again and I was willing to go through the discomfort (if I had any). I blame my calcinosis on the medications and I think it was plaquinel or the immune suppressant. That has not gone away but it isn't creating new sites anymore. If anyone has calcinosis and they are taking any of these medications and it showed up after they were on them for a month or ??? let me know. Nobody does research on this and I had to experiment before everything got really bad. My friends can't believe how good I'm looking, hair growing back, gaining weight and a jump in my step. I feel very fortunate and this may not work for you or others but I'd sure like to know if anyone has gotten the calcification under their skin (hard lumps) or even ossification where calcium is growing on the skeleton.
@proudindian, hopefully it is only to change medication doses. They probably found a level that was off in your lab work. Please keep us posted.
HI WNDWALKER, IT IS GREAT MEETING ALL YOU GUYS. I ALSO HAVE RAYNAUD'S ALONG WITH MAC, INTERSTITIAL PULMONARY ,SJOGREN'S , PHIEBITIS, CAP, COLON CANCER. I HAVE LEARNED MORE IN DETAILS ABOUT ALL OF MY CONDITIONS FROM ALL OF YOU THE DOCTORS ONLY GIVE A LIMITED BRIEFING AND AFEW RESEARCH PAPERS. BUT EACH DISEASE TAKES ON SYMPTOM CHANGES AS TIME GOES ON.. EACH TIMES TONS OF TEST ARE NEEDED TO CONFIRM ANEW DISEASE HAS NOT MOVED IN , IN JOIN THE REST OF THIS CLAN, WHO IS ALL LIVING IN MY BODY .IT'S NOT AS SCARY SINCE I HAVE BEEN SPENDING TIME WITH YOU GUYS. I'M 68YRS. OLD AND YOU ARE MAKING MY DAYS A LOT LESS STRESSFUL. THANK YOU, FROM CAJUN LAND, TONI ANN
Welcome toni68 Its good you found this group there,s alot of information here I have fibromyalgia,fracture back,fr.ankle other back problems. I am a retired nurse and write about some information that I know , I also have sjogrens..
Create an account to connect with other patients and caregivers like you.Ask questions, get answers, and give and get support.Also follow blogs from Mayo Clinic experts.
Already have an account? Sign In