Originally Posted by norahs

Hi
I am so sorry you have to go through this at such a young age. It’s not fun at any age so I can’t imagine being your age with it.

Have your doctors mentioned Erythromelalgia to you? You are so young that even if they have heard of it they might not think of it. Usually people get this when they are older but some get it very young and in the young it is often hereditary. Does anyone else in your family have symptoms?

This disorder goes largely undiagnosed because most doctors don’t recognize it. Symptoms often times do not manifest during the day so even if you have a doctor appointment doctors don’t always get a chance to see it firsthand.

This may or may not be what you have and I hope it isn’t but since we have the same symptoms I thought it was worth mentioning. Should you wish more information you can go to www.erythromelalgia.org
I will pray you do not have this but thought it worth mentioning. I suffered for two years before being diagnosed. It was a horrible two years in indescribable pain that no one understand. My pain is now fairly controlled by pain meds that target nerve pain so yes there is treatment to make this easier if this is what you have. Even if what you have is PN the same med’s would apply, find a doctor that will help you with this.

My advice is to not give up hope or give up looking for a doctor that wants to help you. Sometimes if they don’t know what it is they just give up, you need someone that will continue to look until they figure it out. Those doctors are just as rare as the disorder. I wish you all the best in your search for answers.