Bedbound with ME/CFS for almost five months, improved on Mestinon then relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
Been part of clinical study for few months now where they test different treatments on CFS patients
In context ↗ - At worst: Severe
Was stuck to bed for almost 5 months straight, couldn't even think about getting up most days.
In context ↗ - Now: Relapsed
Now I'm walking again, staying awake during whole day ... Most days I can barely leave my bed.
- Began after: nothing they could name
Been dealing with this exhaustion since I was around 13-14
In context ↗
Summary
A Reddit user who had exhaustion since age 13-14, later diagnosed with scleroderma, was bedbound for almost five months straight. In a CFS clinical trial, Mestinon (pyridostigmine) was started at 15 mg daily and built toward 60 mg three times daily; they reported walking and staying awake all day again. A month later they said most days they could barely leave their bed. Diet changes, supplements and stimulants had not helped.
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What they tried
What they credit
Also tried
Their words about each treatment
- Mestonin · Helped a lot
They put me in Mestonin and I can't believe the difference. ... Now I'm walking again, staying awake during whole day
In context ↗ - just work through it · No change
tried that approach countless times and it never worked
In context ↗ - switching up what I eat · No change
None of it makes any real difference that I can notice
In context ↗ - stimulants · Worse
I've tried stimulants but they make me anxious and mess with my heart rhythm which is already problematic
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. The chart starts 14.6 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 13-14 | exhaustion began in early teensBeen dealing with this exhaustion since I was around 13-14In context ↗ | Not stated | |
| late 2025 to April 2026 | bedbound for almost five months straightWas stuck to bed for almost 5 months straight, couldn't even think about getting up most daysIn context ↗ | Severe | |
| 2026-04-25 | walking and awake all day again on Mestinon in a CFS trialNow I'm walking again, staying awake during whole day, actually living like normal person againIn context ↗ | Near normal | Mestinon / pyridostigmine |
| 2026-05-28 | back to barely leaving bed while still trying diet, sleep and supplement changesMost days I can barely leave my bedIn context ↗ | Severe |
Adverse events
- Stimulants (unspecified)“I've tried stimulants but they make me anxious” In context ↗ Mood or psychiatric effects
- Stimulants (unspecified)“mess with my heart rhythm which is already problematic” In context ↗ Heart rhythm problems
Symptoms mentioned
Their words about their symptoms
- Anxiety & low mood
depression has made everything much harder to handle
In context ↗ - Pain & fibromyalgia
finally got diagnosed with Scleroderma along with chronic pain and exhaustion
In context ↗ - Heart symptoms & palpitations
mess with my heart rhythm which is already problematic
In context ↗ - Sleep problems
fixing my sleep patterns
In context ↗
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