Crest syndrome

crest syndrome is an auto immune disease! its unknown to most people, even doctors! its very rare, last year i was diagnosed at the age of 21, just a few of my symptoms are arthuitus, and raynauds syndrome! much much more, my question is, is there anybody else out there with it?? and any suggestions or remedies to help the pain and inflamation (inflammation) etc etc

[Tamylou]

www.Inspire.com/groups/scleroderma-foundation
Has a fantastic site for people with all sorts of scleroderma-many with the CREST /Limited form
and they talk to eachother daily...Great for info and talking with others :)

[mollyadelaide]

It's been quite awhile since you posted this, but I was just using the search area of medhelp and came across your post. I believe I have crest though I'm not officially diagnosed yet. My ana is 1:1280 in the anti-centromere pattern (centromere 5.5). I can't get back into the rheumy until July. I had elevated ana in the centromere pattern 2 years ago as well. I don't understand why they didn't diagnose me then. I didn't realize CREST is rare! That makes sense why there seems to be so little about it on the net.
I'm 33 years old and was first diagnosed with RA when I was 17 years old. I've had raynauds and joint pain since I was 13.
Do you have symptoms other than the arthritis and raynauds?

[tanninggirl]

i'm new to this forum but i do have CREST SYNDROME which i have the raynaud's mainly in my hands.  I have tried all kinds of blood pressure pills and when i move up on dose to help it causes more raynauds.  I finally was put on nitroglycerin patches and had to be moved up once and now i'm adding ginko to my dose and i have finally saw a change.  Not a perfect fix yet but much better.  I also take fish oil twice a day for the inflamation (inflammation).  

Nitroglycerin does cause headaches but i put mine on at night so i'm sleeping thru most of the headaches.  It works much better that way and they do pass after about 3 weeks.  Hope this helps.