Been 18 months in now, and my neurologist finally ran the full panel - all of it. MRI, spinal tap, metabolic work, the whole thing. Everything came back normal. Clean.
So I asked what I think is the obvious question: if the tests say nothing’s wrong, what am I actually crashing on? He said it’s not the tests. It’s me not pacing correctly. Which, okay, maybe.
But I know what pacing looks like - I teach people about it. The post-exertional malaise is real, the window is real. But even when I nail the pacing, even when I stay at 70% of what feels sustainable, something still shifts. One day of normalcy costs me four days flat.
The tests don’t catch that. They show a normal person who should be working full time. Does anyone else have this experience - completely normal results but your body is clearly broken in ways the tests can’t measure? Does it help, eventually, letting go of expecting validation from the bloodwork?