Dear Debbie

i am so sorry for you and everyone here that replied that they too feel a wasting away feeling. I wish i had a blanket like Linus on Charlie Brown to give to everyone that would work like magic and make you feel great and loved! I hear your frustration. I truly do. Im falling apart too. some days more obvious then others. I dont exercise because I hurt but others say you have to it will help in the long run. I have a little weight kit that i am going to try to make a plan to use this weekend and start a small routine. i also am losing my ability to walk...i have to work on getting up each hour and taking some steps. i know how bad it hurts. but please dont anyone give up. we have to keep going for our family and friends. they really need u so much more than we can understand. its so frustrating to go to the doctor and get these blank stares like i want to help you, but i have used all the tools in my box for you...i dont have any more.
BUT NIH is working on more clinical trials everyday. we have to have hope that they will come up with something diffeent that can really help us.
keep hanging in best as you can and post here on your good days and bad.
you never know who your going to help!
blessings
Lori