I've been in intractable pain for 15 1/2 years. 99.9% of doctors don't have a clue as to what I have. It's hell. The help is few and far between. Often states away for people that don't have the money get there. A handful in the world actually. Even what they offer doesn't lead to answers. It sucks to have an orphan disease that is so rare that it therefore doesn't attract any research/interest or money. I hadn't a clue that this existed in this day and age. I used to be an Rn. Now I barely function.