Its OK Lynne B, I sum it up in Rule 22, The Lemon Rule: 22.
Most treatments for ME are lemons, they don't suit everyone - but you often wont know if it suits you until you suck it and see. If you see a soured look on my face you will know why. http://forums.phoenixrising.me/index.php?entries/28-rules-of-thumb.941/
The only way to tell is to try things a lot of the time. The science is not advanced enough to do more. I am not averse to drugs, but I respond to methylation to some degree, and would want to pursue that first, but I haven't been able to get anything mail order reliably all year due to limited walking capacity, limited energy, a new gate on my community, and a post office system that sucks.
However my energy started going up the same time my neuropathy started getting worse, so if I can get a pair of sandals to protect my feet (I am going to try doing that Friday) then I can go to the post office, so can start mail ordering again.
The first specialist they want me to see is a gastroenterologist. At some point I might get to see a neurologist, but it will be down the track. My local doctor is useless, and my ME doc I see only occasionally.
I did try ice water on my feet when I had bad burning feet, but it was too cold. Then I tried cool water, but it didn't work that well. Eventually I found
hot water worked better for me with a longer lasting effect. It works best if the hot water is so hot I can only stand it for a minute, but is not hot enough to burn me, and I repeat the water dunking several times.
Methylation supps including lipoic acid also helped.
When I was in hospital with an immobilized leg they had me on a blood thinner ... that had my whole body screaming with heat, and was the first experience I had with full body neuropathy. I even wound up having an argument with a nurse, doh.
I want to pursue all these paths till I find one that works, but like most things it happens slowly.