I have fibromyalgia which is very similar so I have a good idea of how you may be feeling. It can be very depressing & one of the hardest things is keeping your spirits up. If you google there are many forum/chat sites for m.e. & similar problems....I recently joined one for fibro where everyone is very upbeat & totally barmy!
I've also recently posted to another ABer Baby Jane....I'm sure she'll answer you if you post on HERE