Severe rolling PEM for 3 weeks, rapidly declining – need urgent advice
Hi everyone,
I’m in a severe rolling PEM crash that’s been going on for about 3 weeks and I’m rapidly losing function. I’m pacing as strictly as I can — I’m being fed meals, minimizing movement and speaking as much as possible.
Despite this, I’m continuing to crash. My PEM presents primarily as intense burning pain in my arms and legs that worsens with any movement, along with a “brain on fire” feeling neurologically.
I genuinely don’t think I can reduce activity any further at this point. I’m already at the bare minimum (only getting up to use the bathroom, though even that is difficult — my caretaker won’t set up a bedside commode).
I have a friend helping me plan a doctor’s appointment soon. Right now the plan is to ask about:
- Low-dose Abilify (LDA)
- A short course of benzodiazepines to break the cycle of severe insomnia and hopefully interrupt this rolling PEM
I’m honestly scared because I feel like I’m continuing to decline despite doing everything “right.”
Questions:
- Has anyone been in a similar prolonged rolling PEM and managed to stabilize? What helped?
- Does this sound more like neurological/glutamate-driven PEM to you?
- Any success with LDA in this kind of crash state?
- Did short-term benzos help you break a crash cycle, or did they backfire?
- Anything else I should urgently consider or ask my doctor about?
I would really appreciate any advice or experiences. I feel like I’m running out of options.
Thank you 🙏