As a mild-to-moderate person like you I want to ask you a few questions because I find a major aspect of my illness to be very different. Both you and Emma Blackery have said that one of your symptoms is sleepiness and that you can and must sleep a lot.
For me and I believe many others with ME that is not a symptom. In fact we get the exact opposite this disease causes a complete inability to sleep and intense sleep disturbances even when you are absolutely shattered. I wish I could sleep a lot more because it improves my symptoms more than anything else.
Also for me normally fatigue/tiredness is not a cardinal symptom. The excessive exertion makes physical symptoms so much worse, i.e. feeling totally unwell like I've been poisoned, swelling lymph nodes and flu-like feeling, circulatory problems, muscle pain and soreness, severe headache particular behind my eyes, GI problems, abdominal swelling, complete sensory overload causing pain like my head is going to explode. For me it's all of these symptoms getting worse at once and feeling so unwell, that I have to "shut off" and the only way to feel better is to lie down in the dark with no input. So for me I wouldn't call it fatigue/tiredness more sick/unwell/poisoned feeling. But I can't normally sleep during these times unless I use medication to knock me out.
Hi that's ok ask me as much as you like
I can certainly say without a doubt that early on I had those exact issues. I remember being utterly overwhelmed with exhaustion late at night and having this 'wired' sensation that kept from being able to sleep - it's like torture (being held in an interrogation centre and being forcibly sleep deprived for days or weeks) . Melatonin worked a couple times but it's effect diminished quickly.
A holistic doctor gave me GABA and that actually worked quite well combined with melatonin - GABA isn't thought to get through the blood-brain barrier but it definitely has an effect on me so some of it must get through. I haven't used it for ages though maybe I should try again.
I also found out that Acetyl-carnitine kept me awake at night too so I stopped taking that in the evenings - it can certainly worsen insomnia - I didn't really realize it because I was taking it in a complex form with other things.
But since then with B12 injections and some response to antibiotics and possibly antivirals and treating sinusitis it is better than it used to be. Don't get me wrong though, I still have to have melatonin to get to sleep (otherwise I lay awake for hours) and waking up is awful.
I've found that my sleeping rhythm seems to have shifted to about 3am-1pm (If I sleep within that time I'm actually far better than trying 7am-10pm with daytime naps).
In saying that though I am starting to wonder if my illness paradigm is starting to more closely resemble narcolepsy rather than CFS/ME? Most of the symptoms that are associated with CFS/ME like brain fog, IBS, light/sound sensitivity, cold intolerance, frequent urination, unquenchable thirst, orthostatic intolerance I've had in the first 18months of the illness but I don't have anymore.
I would say I also have muscle weakness but that could be a symptom of orthostatic intolerance (blood flow/vascular problems) or just general weakness from an inability to 'wake-up'.
My main issue now is persistent daytime tiredness so it seems like my brains ability to regulate the sleep/wake cycle is damaged. And that is what is the central problem with narcolepsy which ironically is now also proven to be an autoimmune disease often triggered by stress or infection with an underlying genetic susceptibility.