u/WorriedBroccoli3

I’m severe and bedbound with ME/CFS, and one of my biggest problems is what I call wired PEM.
Unlike the more typical descriptions of crashes, my PEM often starts with only minor symptom exacerbation. I often actually feel better initially, even though I’m accumulating exertion beyond my limits. I might feel slightly more alert, energetic, motivated and mentally engaged.

I become almost compulsively drawn to stimulation, especially using my phone, researching things and engaging in conversations. I know intellectually that I need to rest, but actually disengaging feels incredibly difficult. It’s almost like my brain refuses to let me rest even though my body desperately needs it.

The particularly frustrating part is that I often don’t fully recognise the wired state while I’m in it. I might suspect it, but I find ways to explain away the warning signs because I genuinely feel capable of continuing.
Eventually, after weeks or months, my worsened neurological symptoms become more obvious, but by then I’ve already overexerted myself and headed for a crash (which will always lower my baseline).

My deterioration has been largely cumulative rather than caused by individual major crashes. I can exceed my energy envelope a little every day without realising the consequences until it’s too late. Over time, this has repeatedly lowered my baseline.

I’ve tried strict screen-time schedules, which can help when I’m stable, but become much harder to follow once I’m wired (when I both feel fake better and also my impulse control is lower)

I’m curious:

Does anyone else experience PEM as a state of increased drive and stimulation-seeking, rather than immediate exhaustion?

Do you find that your ability to recognise overexertion or control your behaviour changes during these episodes?

Has anyone found anything that actually reduces the wired state itself, whether medication or something else, rather than just relying on willpower to rest?

I’m especially interested in the possible neurological mechanisms behind this and experiences from others with severe ME.

Hi! looking for podfic recommendations as I can’t read for long periods at a time due to disability.

So far, I have mostly read Wolfstar and Jegulus but I am open to expanding as long as the podfic is well read with good audio quality.

What I have listened to and enjoyed immensely so far:

Crimson Rivers and You signed up for this (WIP) - both as recorded by Glitch

The cadence of part-time poets - as recorded by Lana

There is also a really nicely read WIP version of ATYD Sirius pov that I can’t remember the name of, sorry!

Anyways open to any suggestions, thanks loads in advance!

Hi! Anyone else with this same problem - very high fecal calprotectin (>1000 on multiple occasions), yet colonoscopy and small intestine capsule endoscopy look normal. My doctors are baffled and so am I. I have severe MCAS since developing long covid and it’s mostly gut and food intolerance symptoms I deal with. I keep assuming it’s that and dysbiosis that is behind the high calpro, but my docs say it’s not possible for them to cause such an elevation on their own. Experiences? Thoughts? I am severe and bedbound with slow motility and constipation.