Mild to moderate ME/CFS, unable to exercise, much better on Mestinon
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I've had long-covid for about 3.5 years now, with ME/CFS starting about 18 months ago.
In context ↗ - At worst: Moderate
Relative to people on this forum I suppose I would consider myself closer to mild/moderate ... as a former athlete I feel like a shell of a human now.
In context ↗ - Now: Much better
Mestinon changed my life. Almost entirely removed my hypersensitivity to sensory overload. Increased my capacity to exert (can’t work out but can walk without getting drained).
In context ↗ - Began after: COVID
Covid caused my ME.
Read from 21 of their posts and comments; links to the 13 this page draws on
Summary
A former athlete who got long COVID in late 2021 and ME/CFS about 18 months later rated themselves mild to moderate, unable to exercise, with PEM, POTS, constipation and sensory overload. Stellate ganglion block and pulsed radiofrequency in mid-2025 may have left them slightly worse, though it's unclear whether the procedures or the travel was to blame. Mestinon in early 2026 caused a first-day crash, then largely reversed their sensory issues and let them walk without being drained, though exercise remained out of reach.
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What they tried
What they credit
Also tried
Their words about each treatment
- Low dose naltrexone · Helped a lot
Low dose naltrexone. Lifesaver.
In context ↗ - SGB block · No change
I can't say that I felt any immediate relief from either procedure
In context ↗ - Pulsed Radiofrequency (PRF) · Not said
I'm two weeks post-PRF now, so I'll keep everyone posted if I experience any notable changes.
In context ↗ - SS-31 · Much worse
SS-31 flared my POTS to the worst it’s ever been, so use caution
In context ↗ - alprazolam (Xanax) · Helped
I use 0.25mg - 0.50mg of alprazolam (Xanax) and find it very helpful
In context ↗ - dextromethorphan · Helped
To reduce PEM I usually prefer dextromethorphan.
In context ↗ - propranolol · Not said
I’m on both - started with propranolol and added Mestinon later.
In context ↗ - Mestinon · Helped a lot
Mestinon changed my life. Almost entirely removed my hypersensitivity to sensory overload.
In context ↗ - Ozempic · No change
Didn’t notice much of an improvement unfortunately. I started Mestinon around the same time though
In context ↗ - Rapamycin · No change
Similarly on week 4 at 6mg/week. Not feeling anything yet, positive or negative.
In context ↗
Approaches: POTS medication
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| about 3.5 years before June 2025 (approx. late 2021) | long COVID after a COVID infectionI've had long-covid for about 3.5 years nowIn context ↗ | Moderate | |
| about 18 months before June 2025 (approx. end of 2023) | ME/CFS onset; mild to moderate, unable to exercisewith ME/CFS starting about 18 months ago ... I suppose I would consider myself closer to mild/moderateIn context ↗ | Moderate | |
| June 2025 | felt a bit worse after stellate ganglion block and pulsed radiofrequency, plus travelI do notice myself feeling a bit worse since the procedures, but hard to tell if it's from the procedures themselves or all of the travelIn context ↗ | Moderate | |
| February 2026 | Mestinon reversed much of the sensory overload and PEM; walking without being drainedThe first day it actually caused me to crash but I recovered pretty quick and the improvements from then on were drastic.In context ↗ | Mild | Mestinon / pyridostigmine |
| August 2026 | still on Mestinon; can walk without draining but cannot exerciseChanged my life. It did cause me to crash like crazy on the first day, but by day two it was a life saver.In context ↗ | Mild |
Adverse events
- Stellate ganglion block“I do notice myself feeling a bit worse since the procedures, but hard to tell if it's from the procedures themselves or all of the travel I had to endure” In context ↗ Made symptoms worse
- SS-31 (elamipretide)“SS-31 flared my POTS to the worst it’s ever been, so use caution” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“It did cause me to crash like crazy on the first day, but by day two it was a life saver.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I can still get cognitive PEM but it's much, much harder and I rebound quicker.
In context ↗ - POTS & dysautonomia
SS-31 flared my POTS to the worst it’s ever been
In context ↗ - Gut problems
LC caused constipation but it disappeared entirely during the acute phase.
In context ↗ - Light & noise sensitivity
Almost entirely removed my hypersensitivity to sensory overload.
In context ↗
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