Wow, yes, our stories are very similar! I'm happy to share/answer any further details you'd like to hear. I feel for you. I experienced the joint and bone pains as well. There were days that I woke up feeling like I had been in a terrible car accident. Everything hurt and I had to just lay down and move as little as possible. It was awful and caused me to miss a lot of work which put me in a financial crisis that I'm still in today. Have you had any infusions/phlebotomies done? How high did your hemoglobin & hematocrit get?