Hardly able to get out of bed with ME/CFS, now somewhat better after doctors listened
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
Afterwards, I developed chronic fatigue (potentially CFS) on top of Hashimoto's
In context ↗ - At worst: Severe
At some point I could hardly get out of bed, I have terrible hyperacusis which prevents me from even going outside on many days
In context ↗ - Now: Somewhat better
My health is slowly getting better, but it is a snail race:)
In context ↗ - Began after: injury or surgery
I got a concussion, which turned into post-concussion syndrome
Summary
A woman in Germany developed post-concussion syndrome after a concussion, then chronic fatigue on top of Hashimoto's. At her worst during about 3.5 years she could hardly get out of bed, with severe hyperacusis and cognitive problems. She had just started to improve before her girlfriend left in mid-2025, and later credited not being in that draining relationship, plus doctors who took her seriously, with helping her slowly improve; by mid-2026 she was still slowly improving.
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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 3.2 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 |
|---|---|---|
| onset | concussion, then post-concussion syndrome, then chronic fatigueI got a concussion, which turned into post-concussion syndrome ... Afterwards, I developed chronic fatigue (potentially CFS)In context ↗ | Not stated |
| early 2025 | nervous system crashed after near-breakup, moved in with parents and got more illafter she almost broke up with me 4 months ago, my nervous system just couldn't handle itIn context ↗ | Severe |
| 2025 | could hardly get out of bed; severe hyperacusis and cognitive problemsAt some point I could hardly get out of bed ... my cognitive problems are so severe that I oftentimes can't even have a conversationIn context ↗ | Severe |
| June 2025 | started slowly getting better againI had just started to get better again ... I am slowly getting better | Severe |
| April 2026 | got physically better after the relationship endedI actually got better physically after some time bc this relationship was much more draining than I realizedIn context ↗ | Mild |
| July 2026 | health slowly improving, in a new relationshipMy health is slowly getting better, but it is a snail raceIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Brain fog
my cognitive problems are so severe that I oftentimes can't even have a conversation
In context ↗ - Light & noise sensitivity
I have terrible hyperacusis which prevents me from even going outside on many days
In context ↗ - Pain & fibromyalgia
1.5 years of agonizing pain on top of cognitive issues
In context ↗ - Anxiety & low mood
I just feel really empty and hopeless
In context ↗