It's been 5 years since onset for me, only 4 months since diagnosis. There was a point where I was so incredibly sick between the pain from CRPS and undiagnosed celiac that I was sleeping 16+ hours a day and spent the rest wishing I was asleep so I couldn't feel the pain. Now though I don't let things get me down. My activity is pretty restricted still, but I have managed to start my own business which includes spending every Saturday at the farmers market, I do my own shopping and cooking and I just (finally!) was able to find a DDR dance pad for sale so I can get a little fun type exercise added into my days. I also plan big days a few times a year, Comic Con, zoo trips, the aquarium, things like that. This fall I'm doing all three days of the con. (I'll probably be falling down dead at the end of every day and sleep for a week and it will all be worth it!) I spent a few years sleeping my life away, I won't give up more of my life to some stupid disease. If I'm going to spend every moment of every day of the rest of my life in pain anyway, by God I'm going to enjoy it!

I've had docs try lots of meds for me. None of the daily stuff has worked for me. It has either been completely ineffective or had side effects that were so bad I was forced to stop taking it. What my PM doctor and I have come up with instead, for now, is simply putting me on tramadol. It's not a particularly strong opiate and as long as I only take one at a time it doesn't make me loopy. (If I take two I turn into the caterpillar from Alice.) It doesn't take the pain away, but on the bad days it keeps it at a level that makes life livable and on the worst I add judicious use of heating pads and essential oil. That probably sounds hippie-ish and I thought it was stupid before I tried it but a friend sort of popped it on me and it actually worked. So I keep a little ylang-ylang and frankincense around for the worst days. I don't use it particularly often because my husband can't stand the smell or I'd try to give up the opiates. Anyway, just some ideas on what's worked for me that maybe you could try. And I think it's awesome that you refuse to give up your life to some lame disease. Good for you!