ME/CFS
Severe → no benefit
Severe ME/CFS in a rolling PEM cycle, no improvement trying to start Mestinon
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I am in a rolling PEM cycle and just want to numb myself out so I can rest
In context ↗ - At worst: Severe
I am severe, my life is so small and painful.
In context ↗ - Now: No benefit
It’s just getting worse.
In context ↗
Summary
A Reddit user with ME/CFS described being caught in a rolling PEM cycle in July 2026, with a racing mind keeping them awake and aggressive rest no longer restful. They had been trying to start Mestinon but kept crashing. By early August 2026 they called themselves severe, said their life was small and painful and that they were getting worse, and asked which medication was safest to start.
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What they tried
Their words about each treatment
- Mestinon · Not said
I’ve been trying to onboard Mestinon but I’m trying to not be in PEM or Fight or flight for a few days.
In context ↗ - Aggressive rest · Worse
Aggressive rest is making me worse because my mind is just racing and I’m so isolated.
In context ↗ - Strict pacing · Not said
I pace vigorously. Very strict pacing. ... I’m not making any progress and I’m desperate
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2026-07-26 | rolling PEM cycle; mind racing, aggressive rest not restfulI am in a rolling PEM cycle and just want to numb myself out so I can restIn context ↗ | Severe |
| 2026-08-06 | worsening; seeking a safe medication to startI am severe, my life is so small and painful. I’m at the point where I need to try meds to give myself a chance ... It’s just getting worse.In context ↗ | Severe |
Adverse events
- Radical rest“Aggressive rest is making me worse because my mind is just racing and I’m so isolated.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I am in a rolling PEM cycle
In context ↗ - Sleep problems
My mind won’t stop racing. It’s keeping me up.
In context ↗ - Anxiety & low mood
I don’t think I can do this anymore.
In context ↗ - Heart symptoms & palpitations
Aggressive rest isn’t restful because heart is pumping and mind is racing
In context ↗