I am here to learn more about this disease. I am the first and only in my family to ever have it. I feel alone sometimes though I have a wonderful supportive family. I just don't feel they really understand because they don't know about the disease. Only what I tell them. I just don't want to be a burden on any of them so I don't talk alot about it. Now feb.09 its almost been a year and my symptoms are aggrevating. I am sick of the pain. No pain meds can't seem to get any so I guess I will have to deal with it.