We found an excellent blog post written by fellow Frostie Tami Veldura. It starts out much like an AA confession: “Hello folks, my name is Tami and I have Raynaud’s Syndrome” and includes her 8-step program for minimizing attacks, the last one being the need to control her intake of alcohol (told you there’s an AA theme here!).
Tami proceeds to define Raynaud’s, shares some stats, and identifies major triggers for attacks. She’s certainly done her homework on the subject. The only point we take issue with is the reference to “there’s nothing painful involved.” Maybe Tami is one of the fortunate few, but for most Raynaud’s sufferers we do find the condition more than uncomfortable and inconvenient, it often involves real pain.
Here are the eight steps Tami takes to manage her Raynaud’s:
Sheepskin-lined Boots – worth the investment
Fingerless Gloves – lives in them indoors
Space Heater – under her desk to warm frosty toes
Stationary Trainer – regular exercise helps reduce and manage her symptoms
Mid-day and Bed-time Showers – help stabilize body temperature after workouts & just before bed
Yoga – helps lessen the severity of attacks and sometimes can cancel one in progress
Food – eats every 2 hours to keep blood sugar steady; sticks to a healthy triathlete training diet
Alcohol – controls the intake as it can release body heat and lower the core temperature
The post ends with suggested resources (including us!), and a recommendation to consult a medical professional. When you do, come armed with your list of symptoms and research on Raynaud’s, as there’s no formal test to diagnose it. While she references the possibility of being eligible for disability, that’s more likely for severe cases that are secondary to other more serious autoimmune diseases, or for those employed in occupations where exposure to extreme cold is inherent in the job, sorry!
She ends with an invitation to chat about Raynaud’s together on Twitter, so take her up on it @tamiveldura. Here’s a link to the blog post titled: My Fingers and Toes Never Seem To Warm Up. Tami, thanks for helping to spread the word!
Just wanna say I love your site because it helped me learn more about Raynaud’s…thought I was alone until I found you all…getting to read what others do for it helps a lot…thank you for your association :)
by C.U. (KY)
Love Your Site
Thank you! I am So happy to have found this community & organization.
So Happy to Find This Community & Organization
I appreciate your website and organization as it is a great source of information as I try my best to manage my Raynaud’s.
by N.Z. (Canada)
Great Source of Information
Just learned I have Raynaud’s…Glad to have found this org!
by N.H. (Canada)
Glad to Have Found This Org!
The Raynaud’s Association provides a lot of essential tips and resources to help me manage my day to day symptoms. I’m able to manage much better thanks to this Association.
Able to Manage Much Better Thanks to This Association
I found this association and group 3 days ago and have already been helped so much…thank you for existing! I’m grateful to learn from you all.
By J.F. (IL)
Thank You for Existing!
I found the information very informative and would like to receive the newsletter. Thank you!
by L.S. (NM)
I Found the Information Very Informative
Helps me not feel like I am not alone, gives me a way to stay connected to new products & the newest medical findings, or new medical ways to treat Raynaud’s.
Helps Me Feel Like I Am Not Alone
Love them for keeping us updated on products, and sharing stories of other people who live with Raynaud’s.
Love Them for Keeping Us Updated
I am so excited that I came across this page. I look forward to discussions and the insight I will gain on this site.
by N.E. (Facebook Fan)