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!
Thank you for the info! First time I have been here, and it’s nice to have the ‘connection’ with others in the world!
by J.F. (NY)
Thank You for the Info!
Great to find you! Have very much appreciated reading your blog entry on Keeping Toes Warm!
By P.M. (AR)
Great to Find You!
It provides support & important information.
by B.B. (LA)
Provides Important Information
Thank you so much for making this page and having people donate to this.
By M.J. (Facebook)
Thanks So Much for This Page
Please keep up the great work. Your work touches so many unknown but eternally grateful people.
by M.W. (WA)
Keep Up the Great Work
Thank you! I am So happy to have found this community & organization.
So Happy to Find This Community & Organization
I wouldn’t wish this disease on anyone…but it sure feels good to know you can share experiences with someone who TRULY knows your pain.
by M.H. (Facebook Fan)
Feels Good to Share Experiences With Someone Who Knows Your Pain
This organization keeps me informed of ways to manage my Raynaud’s. From reviewing & testing warming products to keeping us up to date on the latest medical developments, I really appreciate it.
Keeps Me Informed
The Raynaud’s Association has given me a platform to speak about my journey with Raynaud’s. I felt alone, but once I found this association I met thousands of other sufferers.
by A.C. (NY)
Platform to Speak and Not Feel Alone
Keep up the great work with the newsletter, always a pleasure to read.
By J.C. (Canada)