ME/CFS with PEM and POTS, Mestinon helped before relapsing to moderate after a hike
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I have experimented with higher doses but im not sure if I saw greater improvement.
In context ↗ - At worst: Moderate
I am moderate and was mild-moderate when I started taking Mestinon.
In context ↗ - Now: Relapsed
I was in remission for over a year but decided to hike up a mountain for 4 hours and now I’m experiencing symptoms again. ... Now back to moderate for about a year.
Read from 12 of their posts and comments; links to the 8 this page draws on
Summary
Plover 22926 described ME/CFS with post-exertional malaise and POTS, and was mild to moderate when starting Mestinon, which they found very helpful at 10 mg three times daily. They had been in remission for over a year, working out at the gym six days a week, then relapsed after a four-hour mountain hike and were back to moderate. TUDCA gave instant, sustained improvement in energy, and self-injected treatment helped immensely.
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What they tried
Also tried
Their words about each treatment
- Visible · Helped
It works best when you use it over a long period of time, daily. ... I now can’t live without it
In context ↗ - B12 injections · Helped a lot
it helped me immensely (you don’t have to be deficient) ... the effects for me were immediate and have been long lasting
In context ↗ - Mestinon · Helped
I’ve found it very helpful. 10mg x 3 times daily. ... It improved my overall energy.
- TUDCA · Helped a lot
TUDCA is the main thing that drastically improves my crashes. ... Instant and sustained improvement in energy.
- vegetable smoothies · Not said
I have one for breakfast & one lunch. ... Fast to eat, healthy and low energy.
In context ↗
Approaches: POTS medication · Supplements
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 |
|---|---|---|
| 2024 | living with ME/CFS, tracking PEM and crashesit reduced my PEM likelihood. I can maintain a more stable score throughout the weeks.In context ↗ | Mild |
| 2024–2025 | remission for over a year; working out at the gym 6 days a week for about 10 monthsI was working out at the gym 6 days a week with no issues for about a 10 months.In context ↗ | Near normal |
| 2025 | relapse after a 4-hour hike up a mountain on vacation in SwitzerlandI was in remission for over a year but decided to hike up a mountain for 4 hours and now I’m experiencing symptoms again.In context ↗ | Moderate |
| 2025-10-30 | TUDCA gave instant and sustained improvement in energyInstant and sustained improvement in energy.In context ↗ | Moderate |
| 2026-08-28 | still moderate, taking Mestinon 10 mg three times dailyI am moderate and was mild-moderate when I started taking Mestinon.In context ↗ | Moderate |
Adverse events
- Mestinon / pyridostigmine“FYI I did feel a bit worse the first week of Mestinon.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
it reduced my PEM likelihood. I can maintain a more stable score throughout the weeks.
In context ↗
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