It is hard for all of us with this monster. At times it seems that no matter what we say or try to show love ones and friends what are disease is and does, they just don't get it.

I did have an acquantice (I call her this, because she never asks me to go do anything with her or her friends, just when her boyfriend wants to do something with me and my husband) finally ask me what the hospital protocol should be for the person with rsd. I quoted off the rsdsa instructions.

I think that is the first time, I have had some one really ask me questions about what to do for someone with rsd.

This disease is lonely and it seems even lonelier when everyone else is going on with life and here we sit.
Personally, I try to keep myself as occupied as possible. But I have to agree I still need hugs, so I just tell my husband right out. "I NEED A HUG" give it a try with your mom.