20 hours a day in bed with ME/CFS, much better after bed rest and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
which turned out to be CFS
In context ↗ - At worst: Severe
~20 hours a day in bed
In context ↗ - Now: Much better
go from ~20 hours a day in bed back to working 32 hours a week in a lab ... I still am not fully healthy
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Fatigued from 2021, they began full bed rest at once by chance, then used pacing with a physio. Over about a year they went from roughly 20 hours a day in bed to working 32 hours a week in a lab. They now average 12,000 steps a day and call themselves very mildly affected, but still need a wheelchair for museums and cannot drive because of brain fog, and are not fully healthy.
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What they tried
Their words about each treatment
- full bed rest · Helped a lot
I immediately started with full bed rest ... I think that this helped immensly.
In context ↗ - pacing · Helped a lot
With pacing and the help of my physio I was able to go from ~20 hours a day in bed back to working 32 hours a week in a lab.
In context ↗
Approaches: Pacing · Physiotherapy and rehab · Radical rest
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2021 | became very fatigued, went straight into full bed rest, about 20 hours a day in bedI was very lucky that when I first became very fatigued, which turned out to be CFS, I immediately started with full bed rest.In context ↗ | Severe | |
| about 1 year later | back to working 32 hours a week in a labWith pacing and the help of my physio I was able to go from ~20 hours a day in bed back to working 32 hours a week in a lab.In context ↗ | Mild | Pacing and the energy envelope |
| 2024-08-15 | averaging 12,000 steps a day, still uses a wheelchair for museums and cannot driveI still am not fully healthy, for example I will need a wheel chair for museumsIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Brain fog
I can't drive anymore due to brain fogg
In context ↗
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