Stuck in bed 23 hours a day with ME/CFS, pacing and mini doses gave no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 2.5 years
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
I am severe and i tryed sleep med, mask, sleep aids, nothing gives me anything.
In context ↗ - At worst: Severe
I just want to watch tv, im stuck in bed 23hours a day
In context ↗ - Now: No benefit
I pace well, eat well, do meditatiom, keep a good mindset and use all the tools ive found along the way. Reward : cant leave the bed since feb
In context ↗
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
A Reddit user ill for two to three years was stuck in bed 23 hours a day and unable to leave it since February 2026, with sounds feeling violent, head pressure from screens and sleep broken to two hours at a stretch. A week of good pacing gave brief improvement, then 38 hours without sleep ended by benzodiazepines. By June 2026 mini doses of a medication made them feel better overall, with a couple of hours of fatigue after the first dose.
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What they tried
Also tried
Their words about each treatment
- pacing · Helped
i had a good week with good pacing and staying in bed, i was starting to feel better
In context ↗ - benzos · Helped
Yeah i had to get benzos and finally got to sleep
In context ↗ - meditation · No change
I pace well, eat well, do meditatiom, keep a good mindset and use all the tools ive found along the way. Reward : cant leave the bed since feb
In context ↗ - sleep med · No change
i tryed sleep med, mask, sleep aids, nothing gives me anything
In context ↗ - new medication (mini doses) · Helped
its like mini doses, i feel better overall but i get fatigue for a couple hours when i take my first dose
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 chart starts 2.4 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 |
|---|---|---|---|
| 2-3 years before March 2026 | became ill50 pounds heavier then before i got sick (2-3 years)In context ↗ | Not stated | |
| February 2026 | became unable to leave bedcant leave the bed since febIn context ↗ | Severe | |
| early April 2026 | a good week of pacing and staying in bed, starting to feel betteri had a good week with good pacing and staying in bed, i was starting to feel betterIn context ↗ | Severe | Pacing and the energy envelope |
| 2026-04-11 | sleep turned off, 38 hours awake and wiredbrain decided to turn off sleep mode, just wired as fuckIn context ↗ | Severe | |
| 2026-06-13 | feels better overall on mini doses of a new medication, with a couple of hours of fatigue after the first dosei feel better overall but i get fatigue for a couple hours when i take my first doseIn context ↗ | Severe |
Adverse events
- “its like mini doses, i feel better overall but i get fatigue for a couple hours when i take my first dose...” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Sleep problems
my sleep is just so garbage, cant get more then 2 hours in a row and 6 max in a night
In context ↗ - Headaches & migraine
its not giving me the head pressure screen does at least
In context ↗ - Light & noise sensitivity
each sound so distinc and violent to this broken body
In context ↗