Bedbound with ME/CFS, remission with time and rest, then relapsed after a head cold
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 9 months
- Last post
- Sep 2025
In their words
- Condition: ME/CFS
I got sick in march 2020 with presumed covid, got worse over months with severe me/cfs symptoms
In context ↗ - At worst: Severe
I was bed bound for months from about month 3 onward with crazy neurological symptoms
In context ↗ - Now: Relapsed
I was in full remission and was able to exercise intensely again then December 2024 I caught a mild head cold and within 2 weeks I was bedbound again
In context ↗ - Began after: COVID
I got sick in march 2020 with presumed covid
Read from 27 of their posts and comments; links to the 13 this page draws on
Summary
A Brisbane man fell ill with presumed COVID-19 in March 2020, aged 26 or 27, and was bedbound from about month three with severe sound sensitivity, headaches and POTS. Time, rest and a quiet environment brought gradual improvement to full remission by 2023-24, when he could exercise again. A head cold in December 2024 left him bedbound within two weeks; by August 2025 he was more moderate but still unable to sleep properly or stay upright long.
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What they tried
Also tried
Their words about each treatment
- rest and pacing · Helped
I haven't really pushed myself since first getting sick, so I thankfully haven't yet had any multi-day PEM ordeals.
In context ↗ - time · Helped
I didn't really do anything in particular to improve so I think it just came down to time and rest.
In context ↗ - watching my posture and strengthening the area by being upright more and bedbound less · Helped
Only thing that's helped me is watching my posture and strengthening the area by being upright more and bedbound less
In context ↗ - magnesium · Worse
I've noticed it happening a couple of times when I've taken magnesium (ironically to help me sleep better) but it may be a coincidence.
In context ↗ - benzos · Worse
Seconding the benzos notion, I recently had too many for too many days in a row ... everything is just 10x worse now
In context ↗
Approaches: Pacing
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 3 months 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 |
|---|---|---|---|
| March 2020 | fell ill with presumed COVID-19, aged 26I got sick initially mid-March 2020In context ↗ | Not stated | |
| June 2020 | bedbound for months with severe neurological symptoms, sound sensitivity, daily headaches, could not stand upright for more than a couple of minutesI was bed bound for months from about month 3 onward with crazy neurological symptoms.In context ↗ | Severe | |
| December 2020 | began gradually improving and came out of bedstarted gradually improving in DecemberIn context ↗ | Moderate | Time and spontaneous remission |
| March 2021 | about 70-75% of his old self, could do most things except exercise and long walksI'm over a year out now and about 70-75% of my old selfIn context ↗ | Mild | Time and spontaneous remission |
| 2023-2024 | full remission, able to exercise intensely again2023-2024 I was in full remission and was able to exercise intensely againIn context ↗ | Near normal | Time and spontaneous remission |
| December 2024 | relapse after a mild head cold, bedbound again in a dark roomDecember 2024 I caught a mild head cold and within 2 weeks I was bedbound againIn context ↗ | Severe | |
| August 2025 | pulled out of severe again; more moderate but still cannot sleep properly, be upright long or look at big screensI'm more moderate now but still can't sleep properly, be upright for long or look at big screens.In context ↗ | Moderate |
Adverse events
- Magnesium“I've noticed it happening a couple of times when I've taken magnesium (ironically to help me sleep better) but it may be a coincidence.” In context ↗ Made symptoms worse
- Benzodiazepines (unspecified)“holy moly the rebound effect is just insane. Totally not worth it, everything is just 10x worse now.” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still have to take it easy and not overdo stuff
In context ↗ - Brain fog
worse cognitive issues and light sensitivity
In context ↗ - POTS & dysautonomia
I have pots too, it's under much better control now though
In context ↗ - Headaches & migraine
I still get headaches and some mild dizziness from time to time
In context ↗ - Light & noise sensitivity
severe dizziness and light and sound sensitivity
In context ↗ - Gut problems
And other stuff like nausea, difficulty swallowing etc.
In context ↗ - Anxiety & low mood
the anxiety is absolutely destroying me
In context ↗
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