rauyuands disorder

United States
May 8, 2009 7:45pm CST
i dont know if i spelled this correctly.but was wondering if anyone has heard of this disorder and if you have any advise? i was just diagnosised myself and scared...
2 people like this
3 responses
@Loen210 (1533)
• United States
9 May 09
Sorry to hear about your diagnosis. I was diagnosed with "Raynaud's Syndrome" also. Do a search on the internet. "Raynaud's Syndrome" "Raynaud's Phenomenon" "Raynaud's Disease" Do you know which class you have? Primary or Secondary? Mine is secondary, and not a terrible case. But definitely talk to your doctor about that. Smoking and caffeine are known to trigger off the phenomenon.
3 people like this
• United States
9 May 09
i dont know what stage i have and i was told about smoking and i havnt wuit and it seems to be getting worse.im so scared of losing my fingers:( thanks for sharing
2 people like this
@Loen210 (1533)
• United States
9 May 09
Glad another person could help out (i still have to learn how to be able to copy/paste on here). It won't let me post anything (oops, I just saw in the window it says have to have 500+ points). I'd also suggest that you find online (and if nearby then local too) support groups for it. Message boards specializing in it will be comforting and very helpful! Hang in there.
1 person likes this
@JoyfulOne (6242)
• United States
9 May 09
Hi punlonnjack, I just thought I'd write and let you know that you are not alone. I've had it for at least 15 years now. I have it, my daughter has it, my Mother had it, as well as two of my Mom's 3 sisters. As simple as it sounds, say warm! Especially the fingers and toes. My rheumatologist put me on diltiazem twice a day to help get the circulation better in the fingers and toes. I must say that it helps a lot, but I still get freezing lol. I'm going to pass on a link or two for you. I go there regularly to read, and sometimes participate in the forums. It is very important for us to be as informed as we can be about it so that we can protect ourselves better! Easily said lol, but don't be scared, there is a lot we can do to help keep it under control. This first link is for the Raynaud's Association. Excellent place for information!! They have a newsletter you can sign up for, and I get mine in the mail...it's called Cold Cuts, and has invaluable info in there for those of us that have this disorder. They have great forums there too for Raynauds people. http://www.raynauds.org/index.cfm This next link is for the Cleveland Clinic, which is where my rheumatologist practices. They are always a good source of information, and the Cleve. Clinic is world reknown. I consider myself lucky to have all of my rheum. problems with their fine Drs there. Although they don't have a forum or newsletter, this page does have some interesting facts, so I thought I'd include it here: http://www.clevelandclinic.org/arthritis/treat/facts/Raynaud%27s.htm This next one is Healthlink from the Medical College of Wisconsin. There is a lot on this page that explains a lot of different things about Raynauds in depth. Like what is happening when we're having an acute attack of it, the difference between primary Raynauds and secondary, how it's diagnosed and what they look for, and other interesting stuff to read about it: http://healthlink.mcw.edu/article/926055412.html If you ever want to just talk, or need some other information, just shoot me a private message here and I'd be glad to chat. Though retired, I've been a nurse since the late 60's. I have always found others to talk with, either discussion forums for it, or with people I know. I find it helps a lot to talk to people who have had it, and how they deal with it. Hope you have a wonderful weekend! Joyful
• United States
9 May 09
thanks so much for the information.hugs
2 people like this
• Canada
11 Sep 09
this is an interesting question, but I have never heard of this disorder, so I can't tell you if it's spelled right or not. It would help if you'd describe some of the symptons, so that I could tell you if I've ever heard of it or not.