I am with you on the frustration part. I have to remember to be patient when explaining because most people do not know enough about the disease to understand what we live with on a daily basis.

Oh yes. I use these words feels like - some one is hammering nails into my legs, Someone is trying to break my legs, I have thousands of straight pins in my legs or arms, my legs are asleep, I can't feel my legs, I have shooting pains in my legs, or arms, down my back, in my neck. Also a twisting kind of pain, spasms. Use these words alot.

Yes, tell them it feels like the way you ache when you have the flu.

Yes. I do. For me it is just as hard to understand my pain as it explain it to others.