Raynaud's Disease Support Group

This is just a beginning.
www.medicinenet.com/raynauds_pheno...#1whatis

When I was first diagnosed, I went online and pulled up all I could about the disease and the do's and don'ts.
Educate yourself the best you can and it will be much easier to deal with. Good Luck.
Lo

www.medicinenet.com/raynauds_pheno...#1whatis

I don't think it listed the entire address in earlier post.

im not a doctor but my advice from dealing with this since a young age...

- limit coffee/caffine
- limit stress
- mittons work better then gloves
- when you are having an "attack" move your fingers/toes and rub your hand to get the blood moving again or sometimes i just put them under hot water
- I try and not tie my shoes too tight and avoid overly snug socks that might put what doesnt seem like a lot of pressure on your blood flow but it effects me
- do light cardio
- get massages :) they are great for circulation!
- when you have a cold drink in hand take the little napkin they give you and wrap it around the drink so your fingers arent right on the iced glass
- if you work under an A/C vent - TAPE IT UP! Thats what gets my the most, A/C at work

As for learning more...I just google google google!

I hope that helps.

Kristen 310 I couldn't have said it better. Like myself you obviously have and have been living with Raynauds for sometime now. Raynauds can be treated with low doses of beta blockers. You would have to see a Rheumatologist to dx and then treat. I don't recommend taking medication unless you are on the brink of blisters. I live in New England so living with Raynauds can be a challenge. Truth be told I don't go out much in the winter and right now it is in the single digits and going to get even colder. I am lucky that my partner, Tom, is very understanding and he is like like the heat mizer; he generates lots of heat so needless to say we are snuggling whether he wants to or not in the winter.

I have been taking atenelol (a beta blocker) for about 15 years for mitral valve prolapse. I read that if you have Raynaud's that beta blockers can make it worse.
I see where gi10 said beta blockers can help. Does anyone know for certain? Just wondering.
My lupus dr. said I have Raynaud's but that it isn't very bad. Of course, like you all know if can be so much worse in cold weather. My hands "go to sleep" and start tingling especially at night. I will wake myself up rubbing my hands.
Does anyone else have this symptom?
Thanks...

I have a terible time at nights with numbness and searing pain in both hands. They are swollen in the morning and fingers always sore to touch. hugs

My rheumy says that calcium channel blockers are best for raynaud's treatment. I actually just had an echo to rule out pulmonary hypertension. My raynaud's have been totally out of control for the last year. If it's any colder than about 50 degrees...my hands go white, painful and numb. Mine is so bad though...the air conditioning makes them turn dark blue...scary, I know.

It's my understanding that primary raynaud's is more dangerous than secondary...could be a myth. Mine is secondary to my autoimmune diseases. Keep in good communication with your doctor. I recommend going to see a vascular doctor or cardiologist...they are better educated with long term treatment of raynaud's.

you can google it to begin to understand it. I have had it for about 15 yrs now and its a hard disease to fight. you will remain active and given the right medication you will be fine. its brought on my severe stress is what happened to me. too many things at one time happened to me and I got it. its something you cannot fight off but you can live with it. .. write me if you need more info. I am on Norvac and Xanix together .. that brings my stress level way down. hugs gail