- Erythromelalgia
- Interviews
Winter5@'s interview
How did all start?
I started getting red hand and feet and thought it was a for if eczema, so I used ice packs and cool showers until I got into the dermatologist.
Do you already have a diagnosis? How long did it take you to get it?
It took 3 months and 3 different dermatologist appts, because they didn't address the issue that I asked to be seen about. The asked to see my blood work and that's how they figured it out and my dad carried the gene. I was diagnosed 2 1/2 weeks ago
For what medical specialties have you been treated? What has been the most useful specialty for your?
I am just beginning and only seeing my dermatologist and starting on a ems cream with amitripline,lidocaine,and gabenpen. My psychiatrist is going through all the meds I am on to see about pain management. My primary doctor is working on a blood pressure med referred by my dermatologist.
What has been the most useful thing for you so far?
Cool showers and gel packs and I use a fan at night. I am in a pain med due to fibromyalgia already and waiting in the cream.
What have been your biggest difficulties?
Not able to do my normal day cleaning or activities without a flare-up within 15 mins.i
How has your social and family environment reacted? Have your social or family relationships changed?
I only have my husband as my support system. My kids don't want to learn or help. My doctors.i
What things have you stopped doing?
I quit working 10 yrs ago due to bipolar. But I gave adhd and ocd so I like to clean,shopping and exercise.
What do you think about the future?
I beat brain surgery. This I just another obsactle for me to beat.
So far, which years have been the best years in your life? What have you done during them?
Being a grandma and being there for my family.
What would you like to do if you didn’t have your condition?
Everything I used to. Do things like grocery shopping, running errands or not needing someone to take me to appts.
If you had to describe your life in a sentence, what would it be?
It's just beginning for me.
Finally, what advice would you give to a person in a similar situation?
Learn everything you can about ems, go on ems support sites on Facebook. Learn how you can do your daily activities between flare-ups.
