Scleroderma Support Group

I have Raynauds, but it is common with my type of scleroderm, which is CREST, or limited scleroderma. It's no big deal, if I just use common sense and wear gloves and warm socks and boots.

It is a big deal with a lot of people. No matter how my handfs and feet are properly attired they react. I have crest also. Maybe you live where its warm,

I have Raynaud's, live in Seattle and have found some ways to deal with it that have worked fairly well for me. I have had it only 2 1/2 years and have not developed any calcium deposits, nodules, etc. I was diagnosed with MCTD and then Scleroderma as well. I'm much better from that and I think my Raynaud's getting better because of some things I'm doing naturally and IT'S WINTER...so that's saying something. I used to get it whether winter or summer--just a breeze could trigger it for me. Or a walk into the wrong aisle of a grocery store. What is yours like? Would you like to chat?

I, too, have Raynaud's, and Sjogren's. So far I can avoid the triphasic color changes of Raynaud's if I avoid caffeine. But give me 2 cups of coffee and have me remove my socks and the color changes come on within minutes. Areas of the toes and balls of my feet become almost black.

So do avoid caffeine! I've switched to decaf!

That's really interesting about the caffeine Gardener. I'll have to try switching to de caf although I can only stomach one cup per day due to my Gerd.
I know that my raynauds can't be very bad as I've never had any sores and I'm on a Beta blocker which does make raynauds worse.
I wondered if anyone has had their feet turn blue in the shower? It only happens to me in the winter.

My feet are more likely to turn red in the shower because I am careful to keep the temperature very warm! No cold showers for me!

Hi everyone. My 10yr old has MCTD and has severe Raynoud's we go to sick kids in Toronto on a Reg. basis for treatment. Sometimes just slight temp. changes cause his and if he gets upset. He's on 30mg daily of nifedipine.

Sorry your son has it at such a young age. Gee maybe I will have to try the decaf also. hugs

I've been diagnosed with raynauds, lupus, and sclerederma for 20 years, a helful thing for me with raynauds is to keep my toes and fingers warm. I travel with gloves and socks year round. Winter is a horrible time with raynauds but with knowledge you can overcome.

I am now on a beta blocker and it is helping a lot especially with extreme pain in hand s that was waking me several times a night. Hands and feet still always cold now winter is near. hugs