I definitely empathize with all of you. I was diagnosed 2 years ago with Fibromyalgia. The pain meds that the docs put me on didn't do anything. If fact, one made the pain worse. I was finally put on Effexor, an antidepressant. That has done wonders until I had to move. I am in the Air Force and I can't take sick days. If I can get into the clinic, they can put me on quarters, but that is hard to do. When everythings were going good, I was working standard day shifts. I know do rotating shifts and I am now in a 11 month flare up. I am waiting for a medical board. Basically, one of 4 things will happen. I can change jobs to something that is days only, I will be medically retired (I've been in more than 17 years now), I will be medically separated (same as retire, but without the pay) or told to suck it up and stay where I am. Only time will tell.
For all of you trying to explain this to your family and friends, I found something in a doctors book that may help. Give everyone 10 pieces of paper. One each one, have them write down something that makes them, them. Something that they enjoy doing and expect to continue doing it for the rest of their lives. Then, have them prioritize them 1-10 and put them in a stack. 1 on bottom, 10 on top. Now have them crumble up the top sheet, throw it away and let them know that they can no longer do that item. They have to give it up to be able to accomplish the other 9 items. Now keep doing that until they get to thier number 1 item. Now have them do that to their number 1 item. They can no longer do any of the items that make them the person that they are. Ask them pointed questions about how they feel about losing everything they love? What do they expect to do with their lives now? How are they going to cope? Ask them any of the other 100 questions that are going through your mind on how you are going to deal with it.
Hopefully they will see Fibromyalgia from your eyes and have a better understanding.