Hey James,

Great to hear from you. I'm just a bit behind you and am having the same problems.

To manage the fatigue I have to plan in lots of early nights and fortunately I have a wonderful husband who does a lot in the evenings, often taking over completely, so I can rest up. I too am back at work full-time as I am self employed and just working exhausts me, let alone having any type of life outside of work. It is getting better and I have to try not to do too much and plan ahead with lots of rest beforehand if I do want to go and do something.

My mouth is also very dry at night and my tongue sticks to the roof of my mouth and closes up. I just take 1-2 sips of water and go back to sleep. It use to be about 10 times a night but now only 2-3 times and I've even had a few nights where I haven't woken up at all. I rinse with warm water & baking soda before bed and have water next to the bed but that's it.

I've also continued to have weight loss (we're very similar in all our symptoms), but it is slowing down now (finally) but hasn't yet stopped. I'm eating very small amounts compared to normal so am supplementing with Fortisip drinks. I think we just need to eat more or drink more supplement drinks if the weight loss is still occurring.

Good luck with making some more progress.