Xyrem is only thing that has helped in 35 years and now doc will no longer prescribe it due to FDA regulations!! ANGRY!!! Was on 100 meds before Xyrem, which kept me a zombie. About to go back to sleeping 18 hours a day because of govt. interference!
using online sites, self-diagnosed ME symptoms, incl PEM and Orthostatic Intolerance. With only Fibro diagnosis, many years of only pain meds, finally referred to specialist for proper tests--also diagnosed Ehlers Danlos & treating for OI
Taking charge of my own health and being able to consider diet and treatment possiblilities via the internet when backed by recommendations from other sufferers.
Social support...however minimal. ME/CFS is by its very nature an illness of isolation. Feeling "connected" and feeling part of the web of life allows me to find meaning and purpose for my life.
Sleep and exercise when you can, with the distant goal of reaching your own regular routine, because the only life you will have will have to fit into this.