Irregular sleep-wake patterns

Big ćoF

One of the greatest (if not the greatest) problems I've been having since the beginning of cfs but never posted about it is never knowing how much sleep and how much awake time would I need any day...So some days I would sleep for 8 hours, some over 15; sometimes I would have to nap a few hours upon waking up, sometimes I would stay awake up to 20 hours upon waking up...So I could never make a sleeping routine for more than a few days, and it has destroyed many of my big plans. I have read something about this irregular sleeping just recently, and have to ask - do you think I could also have irregular sleep-wake syndrome? Or that syndrome can be a part of cfs? If you have the same problem, how do you deal with it?
Disrupted sleep pattern a typical part of ME/CFS and sickness behaviour, for sure.

For many it's just delayed sleep phase, but I've been non-24-hour since late teenage. 25h long cycles, so rotating once a month. Saw sleep doc, etc. 'Fixed' it for a couple months after a temporary partial recovery (that came from dietary exclusions). Threw everything at it, 1 hour per day limited screen time, then all the sleep supplements, inc melatonin at night, tyrosine in the morning and many more. After that came unsustainable I relapsed and now have a 26 hour pattern, lol.

Still, any regular pattern's better than totally unpredictable (as you describe), which I can get to if trying to fight my 26h cycle. Makes figuring out meals much harder, etc. Can't say what will apply to you, personally. Good luck.:)

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