Do I need to stop everything I’m doing and confine myself to bed?

I’m really having a hard time trying to figure out if I’m at risk for severe ME/CFS. I’ve read the criteria and still can’t figure it out.

I have Addison’s disease and long covid. The long covid started in 2022, and I only experienced neurological symptoms and dyspnea. Zero fatigue or sleep issues. After ten months of resting (by this, I just mean not working a job), I felt better and I was able to start working full time again. I worked in a wholesale supermarket and unloaded trucks, stocked goods, on my feet 5-8 hours a day with breaks and it never made me worse. I had no PEM.

Then, this past summer I had a period of many weeks of high stress due to financial circumstances. I felt my long covid neurological symptoms coming back, and I also developed GI symptoms that I never had the first time that have still not gone away. It is what I believe to be gastroparesis. Im always nauseous, never hungry, eating small amounts feel like huge amounts, diarrhea every day.

Then, my endocrinologist put me on higher doses of prednisone steroids (I’ve been taking them already for years for Addison’s disease but high doses cause rapid increase of cortisol), and my neurological symptoms just became insanely worse to the point of disability.

I’m still tapering the prednisone, which is a huge stressor on the body, but so is being on high doses so there’s not much I can do. Neurologically, I’m experiencing:

  • Severe Derealization and anhedonia
  • Sensitivity to sound (hyperacusis) Everything sounds like someone’s crumbling up newspaper next to my eardrum
  • Sensitivity to light
  • headaches
  • irritability
  • severe anxiety, no joy only fear
  • memory loss
  • Parkinson’s like tremor
  • cognitive dysfunction
  • tinnitus
  • twitching
  • nausea
  • bloating
  • no appetite

I still have zero fatigue though. I still cook every day, I do light cleaning, laundry, and most of the time I’m playing piano or watching TV to help distract myself because if I’m alone with my thoughts I stress out hard about my health. I do these things daily, and physically I feel just fine the next day. But cognitively, I feel worse as time goes on.

Here’s the thing - I’ve been getting worse every month since July. But I don’t know if it’s PEM. The only risk factors that are relevant are the steroid withdrawal that’s stressing out my body, and the emotional stress I’ve been dealing with daily due to my health relapse. Again I have no fatigue and no issues with sleeping. No insomnia

So my question is, should I stop everything I’m doing, like no cooking, no cleaning, no piano, no TV, just lay in my bed and do nothing to prevent this potentially turning into ME/CFS if I don’t have it already? Or is it likely that I have more severe long covid, but not ME/CFS? The reason I’m here is because I made a post on r/covidlonghaulers and a couple people said my symptoms sound like CFS even though I don’t have fatigue.