ME/CFS
Severe → somewhat better
Mostly bedbound with ME/CFS, somewhat better on Mestinon
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2026
In their words
- At worst: Severe
my worst crash yet that has left me mostly bed bound and out of work
In context ↗ - Now: Somewhat better
I’m still not doing well but it at least seems to lessen the burden there.
In context ↗
Summary
A Reddit user was mostly bedbound and out of work after their worst crash, with trembling legs when walking. Less than a week after starting Mestinon, painful blood pooling in the hands and feet eased and standing heart rate fell by 20-30 bpm. They were still not doing well afterwards, with looser stool and increased urinary urgency as side effects, and had not tolerated LDN.
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What they tried
Also tried
Their words about each treatment
- LDN · Worse
I’m extremely sensitive to meds and couldn’t tolerate LDN.
In context ↗ - Mestinon · Helped
quickly noticed improvement in painful blood pooling in hands and feet (POTS, suspected to be neuropathic type)
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 | After |
|---|---|---|---|
| August 2026 | worst crash yet, mostly bedbound and out of workmy worst crash yet that has left me mostly bed bound and out of workIn context ↗ | Severe | |
| 2026-08-19 | started Mestinon; blood pooling and standing heart rate improvedquickly noticed improvement in painful blood pooling in hands and feetIn context ↗ | Severe | Mestinon / pyridostigmine |
| 2026-08-30 | still unwell, standing heart rate lower on MestinonI’m still not doing well but it at least seems to lessen the burden there.In context ↗ | Severe |
Adverse events
- Low-dose naltrexone“I’m extremely sensitive to meds and couldn’t tolerate LDN.” In context ↗ Side effects
- Mestinon / pyridostigmine“Luckily Mestinon has been tolerable with only note being some looser stool and increased urinary urgency.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
painful blood pooling in hands and feet (POTS, suspected to be neuropathic type)
In context ↗ - Heart symptoms & palpitations
Notice HR is down significantly on standing
In context ↗ - Muscle weakness
Legs still trembling when walking
In context ↗