Bedbound with ME/CFS, crashing from almost everything, worse again after reinfections
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 5 years
- Last post
- Jan 2026
In their words
- At worst: Very severe
I am bedbound in a dark room
In context ↗ - Now: Relapsed
reinfections … brought me back and now it’s been 3 years it’s only getting worse and worse and worse
In context ↗
Read from 14 of their posts and comments; links to the 9 this page draws on
Summary
Has ME/CFS and long COVID and became bedbound in a dark room, crashing from almost everything, including food and water. Over five years of long COVID they lost tolerance to every treatment that had helped them survive, and tiny doses of an antidepressant and pregabalin made crashes longer and pain harsher. Reinfections, including one in 2023, set them back further, and by early 2026 they said they were only getting worse.
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What they tried
Also tried
Their words about each treatment
- Pacing · No change
Pacing never worked …
In context ↗ - anridepressant · Worse
I tried anridepressant and pregabalin, small very small amount makes the crash last longer and the pain harsher the day after
In context ↗ - a clinic · No change
Went to a clinic we tried, for month, didn’t do much
In context ↗ - nac · Worse
Went to a clinic we tried, for month, didn’t do much (dont tolerate nac)
In context ↗ - Ldn · Much worse
Ldn made me worse permanent my
In context ↗ - sun · Worse
Not true for ME CFS sun gives crash.
In context ↗
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 first step with a time is 2 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | bedbound for two yearsI was bedbound for 2 yearsIn context ↗ | Severe |
| 2023 | reinfections; lost tolerance to the treatments that had helpedI tried all of what u mentionned and lost tolerance of those in 2023 after reinfectionIn context ↗ | Severe |
| 2026-01 | bedbound in a dark room, crashing from almost everything including food and waterNow everything makes me crash and worse even food and waterIn context ↗ | Very severe |
Adverse events
- “All immune stimulants made me worse as well as immune blockers” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“I tried anridepressant and pregabalin, small very small amount makes the crash last longer and the pain harsher the day after” In context ↗ Made symptoms worse
- Antidepressants (unspecified), Pregabalin (Lyrica)“I tried anridepressant and pregabalin, small very small amount makes the crash last longer and the pain harsher the day after” In context ↗ Made symptoms worse
- NAC (N-acetylcysteine)“dont tolerate nac” In context ↗ Side effects
- Low-dose naltrexone“Ldn made me worse permanent my” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I crash with everything now
In context ↗ - Light & noise sensitivity
I am bedbound in a dark room
In context ↗