- Erythromelalgia
- Interviews
saguaros's interview
How did all start?
I was in the bathroom looking down at my feet. One was red and felt like it had fallen asleep. I am a hypochondriac and thought at worse it was a spider bite.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed a year and a few months ago. It took me a few months to get the diagnosis as I waited till I got clear pictures. My EM is very textbook.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I’ve been treated by rheumatology, pain management, and dermatology. Honestly most doctors are ignorant when it comes to EM. So I’d say how useful it is doesn’t depend on specialty, but on the doctor within that specialty. While pain management is the best treatment, my duke dermatologist is the best doctor.
What has been the most useful thing for you so far?
The most useful thing so far depends on what are of fairing. For my face flairs the ketamine cream is the most useful.
What have been your biggest difficulties?
My intolerance to heat and exercise are obviously my biggest issues. Friction causes heat so almost everything can trigger my EM.
How has your social and family environment reacted? Have your social or family relationships changed?
It’s difficult. My mother had been a major support but it’s been difficult to get my father to understand that most of the time when I look fine I’m just masking. My friends have distanced themselves because they want to go out and do stuff. I can’t go out and do stuff.
What things have you stopped doing?
Riding. I’ve been riding horses since I was three. I havnt been able to in a year due to exercise intolerance.
What do you think about the future?
I’m scared about the future. My EM has rapidly progressed and I worry if I can take it if it doubles in severity.
So far, which years have been the best years in your life? What have you done during them?
I don’t have an answer for this
What would you like to do if you didn’t have your condition?
Live my life. Be able to do normal things. ANYTHING.
If you had to describe your life in a sentence, what would it be?
Convincing myself to stay alive even though I’m suffering and my life has been reduced to a bed.
Finally, what advice would you give to a person in a similar situation?
Skip Cleveland clinic, Boston pain management had intravenous lidocaine, ketamine cream 5% should be brought up to your doctor, look for mobility aids, and look into water therapy.
