Forum Replies Created
Hi Teresa, just saw your post. For all-day warm gloves, Glider Gloves may be a bit thick. We just tested a glove by a company called Infracare that is thin, touchscreen sensitive, and offers lots of dexterity. I’m able to perform most tasks wearing them around the house and office. They will soon be offering our members a discount on a special URL just for us, but for now you can see the product and buy them at http://www.infracare.ca/. Infracare specializes in supplying products to the medical community that are specifically designed for people with a common problem very familiar to Raynaud’s sufferers – cold hands and feet.
They also make socks, and mother who also has Raynaud’s loves them. I found they did a nice job on my toes, but the top of my foot still chilled a bit. If you do try any of their products, please let us know how you like them!May 27, 2015 at 7:52 pm in reply to: Recruiting for Research Study on Association Between Raynaud’s and Pregnancy Complications #6539
We have the research results! Here’s a link to the post on our site: http://www.raynauds.org/2015/05/27/results-of-university-of-oklahoma-raynauds-and-pregnancy-study/
Thanks for asking! We’re an all-volunteer organization without staff, so we haven’t had the resources to coordinate local fundraising events on our own, but would welcome the opportunity to work with you to do something in your local area. Please contact us directly at firstname.lastname@example.org or 800-280-8055 and let’s discuss how we could work together for the cause.
In response to this post, we’ve had a couple of great suggestions from our Facebook followers for dealing with windshield ice and snow:
From Sarah: “I started using one of these this year and love it! I would recommend it with 5 stars to any fellow frostie! http://www.qvc.com/FrostGuard-Windshield-and-Wiper-Cover.product.V32886.html”
From Lynn: “Better to use a tarp that will not hold moisture or freeze to the windshield like a towel. It’s also thinner than a towel and more likely to close easily in the door.”
Hi Carlo – Thanks for the positive feedback. We do publish a newsletter, and have a 35-page guide available. You can sign up for the newsletter mailing list here: http://www.raynauds.org/join/become-a-member/. You can download a PDF version of our guide or order a printed copy here: http://www.raynauds.org/raynauds-guide-the-cold-facts-on-raynauds/. I’m glad you’re finding our information helpful!September 5, 2014 at 9:20 am in reply to: Recruiting for Research Study on Association Between Raynaud’s and Pregnancy Complications #5396
The University of Oklahoma needs more respondents for their study on Raynaud’s sufferers and their experiences during pregnancy, so Frosties, please help them out – there’s so little research on Raynaud’s sufferers, we want to be supportive!
Casey in WA made a great suggestion:
“Just like us, he should be named “Frosty”, plus the fact they live in warm climates means they can look cold and represent the warm, red part of the cycle, too. ”
What do you think? Like the name? Feedback welcome!
We did contact the Governor’s office today. Will keep you posted if we get a response.
Thanks for researching Michelle. We’ll try to contact the Governor’s office and see what happens!
Now we’re told that we need not just a total of 10 reviews at 4+ ratings – we need 10 since April of 2013, so we need 5 more by the end of October. Can we please get 5 more reviews by the 31st?
Thanks to all of you who’ve shared your positive feedback.
Volt makes some great heated gloves: https://voltheat.com/gloves.html
Raynaud’s Association members get a 20% discount with the offer code: RAYNAUDS. If anyone tries them, please share your feedback!
Bitter-cold winters make life miserable for many Raynaud’s sufferers, but warmer climates also prevent challenges. Attacks can occur in air-conditioned spaces or when it’s a breezy day. Take into consideration the degree of control you’ll have over your environment during the day (i.e., in an office or retail store for work). I’ve known Frosties who moved south, only to be miserable in the air conditioning all day at work and in public places at night.
I can’t say that any one geographic area rates as “paradise” to all of us – as we each have different thresholds and needs. In the end, look at the full relocation opportunity from a lifestyle/family perspective and think through the environmental elements that you’ll be dealing with at home, at work, and other venues. Also recognize that relocation involves a lot of stress which can also trigger attacks, so be prepared.
Hi mzmarygolds. If the nifedipine is giving you headaches, you might ask your doctor for another drug in the calcium channel blocker family – there are several alternatives, so keep trying until you find the one that works best with your body.
As Sarah suggests, rheumatologists will be the most familiar with treatment options for Raynaud’s patients.
Hi Kari, yes, this is unusual for trials. But why not give them a call and see what costs will be involved? Please let us know what you learn!