ME / CFS Rollercoaster Symptoms

Hey Scopers!

I have ME/CFS - diagnosed last November but have been told that I’ve probably had it for most of my adult life (M 50). It’s previously been misdiagnosed as depression - and whilst my mood has certainly often been low I never felt that this was the driver of my symptoms.

Anyway! Back on track… my symptoms come and go in waves. They can ebb away for periods but then come back. It feels insidious. More recently symptoms have come back with a vengeance. It started with migraines, then mouth ulcers, then increased neuropathic pains in my hands and feet, then weakness and the tidal waves of fatigue. And then a few new ones… hunger. I’ve been absolutely ravenous. Like the Cookie Monster. Getting g up in the night to eat, devouring cakes and pastries. And also a new symptom - confusion and memory loss. Digits and words are moved around when I read something. It looks perfectly correct when I read something and check it - only to find that I have transferred an incorrect sum of money to the wrong person. Or I’ve booked a hotel for my partner to the wrong place and for the wrong date. Or I get on the wrong bus and need to get off and have no ability to think of how to get home despite knowing where I am. The problem is that everything looks fine to me - even when it’s not. Which make it scary and distressing. Brain fog? I thought I had this before as a cotton woolly forgetful feeling - but is this truly what it is? Have I been having it ‘lite’ before.

Saw my GP yesterday. No to diabetes and every blood test ordered (there were a few) came back within 24 hours as normal. Typical I know for us with chronic illness.

And so it all points to my ME/CFS!

I guess I just need to rest up and wait it out. But do others experience these constellations of symptoms? It reminds me of the 70s / 80s children game OPERATION where there was a human body and you had to pick bits up with tweezers without touching the board. ME feels like the tweezers randomly picking up a bit of my body and jangling it around and putting it back.

Rant and ramble over! But I am curious as to what others with ME/CFS experience….