ME/CFS
Mild → no benefit
ME/CFS with brain fog, aching and crashes, still exhausted on pacing
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- Not stated
- Last post
- Mar 2026
In their words
- Condition: ME/CFS
Every single thing I’ve learned about cfs/me has come from my own research.
In context ↗ - At worst: Mild
I’m still working 33 hours a week but it’s hellish.
In context ↗ - Now: No benefit
I still have a very long way to go
In context ↗ - Began after: nothing they could name
It started with having to come home from work and sleep for hours.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Diagnosed with ME/CFS at 29 after needing hours of sleep after work, forgetting tasks, losing appetite and waking unrefreshed after 12 hours in bed. Once very fit and active, they still worked 33 hours a week but were exhausted, with brain fog, aching muscles, a resting heart rate of 45 rising to 180-190 on exertion and crashes they described as brain flu. Their GP offered only CBT; pacing taught them to listen to and care for their body.
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What they tried
Also tried
Their words about each treatment
- pacing · Not said
The ONLY benefit of this disease is that pacing has taught me to listen and look after my body. I treat myself with much more compassion.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2026-03-11 (describes onset, diagnosed at 29) | first symptoms while working full timeIt started with having to come home from work and sleep for hours.In context ↗ | Mild |
| 2026-03-11 | still working part time but constantly exhausted, no end in sightI’m still working 33 hours a week but it’s hellish. I’m constantly exhaustedIn context ↗ | Mild |
Symptoms mentioned
Brain fogLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
Crashes feel like brain flue - everything feels like it’s turned up to 100% and very overstimulating.
In context ↗ - Brain fog
my brain feels like cotton most days, I have an awful memory
In context ↗ - Sleep problems
I’d wake up from 12+ hours of sleep and feel like I’d done 4 night shifts in a row.
In context ↗ - Light & noise sensitivity
Sometimes I have to just lie in a dark, quiet room.
In context ↗ - Pain & fibromyalgia
My muscles ache/burn
In context ↗ - POTS & dysautonomia
my resting heart rate drops down to 45 at times, but shoots up to 180/190 when I exert myself
In context ↗