ME/CFS pain for 11 years, somewhat better after moving away from mould and creatine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 11 years
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
robbed of the life I could have had without ME/CFS
In context ↗ - At worst: Moderate
smaller place that I halfway managed to keep clean ... the same excruciating pain every second of every day
In context ↗ - Now: Somewhat better
this helped me to improve little by little over the years ... I still live in the same excruciating pain every second of every day
In context ↗
Summary
Eleven years into a sudden-onset chronic illness, they still have excruciating pain every second and in the first years went a week without sleep. Moving to a smaller, quieter home away from mould, industry and traffic helped them improve little by little. In November 2025, two to three weeks of creatine made exhaustion less devastating and reduced muscular twitching, tension and pain, and they planned to keep taking it.
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What they tried
What they credit
Also tried
Their words about each treatment
- move · Helped
the most simple solution was to move ... this helped me to improve little by little over the years
In context ↗ - creatine · Helped
I felt like the exhaustion hits less devastating, even on the days I overdid it. Also less muscular twichting, tension and pain.
In context ↗
Approaches: Mould avoidance
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | sudden onset of a highly disabling chronic illness (ME/CFS)I think most people suffering from a highly disabling sudden onset chronic illness know very well what it means to lose everyone and everything on different levelsIn context ↗ | Moderate | |
| — | moved to a smaller, quieter home without mould, industry or busy streetsthe most simple solution was to move ... this helped me to improve little by little over the yearsIn context ↗ | Moderate | Relocation and environmental change |
| 2025-11-17 | two to three weeks of creatine made exhaustion less devastating, with less twitching, tension and painI've been taking creatine for 2-3 weeks now ... Also less muscular twichting, tension and pain.In context ↗ | Moderate | Creatine |
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I still live in the same excruciating pain every second of every day
In context ↗ - Sleep problems
In my first couple years I've been wired to the point that I didn't sleep for a week too.
In context ↗ - Post-exertional malaise
I felt like the exhaustion hits less devastating, even on the days I overdid it
In context ↗ - Mast cell (MCAS) & allergies
I can't cut down on my nutrition budget to fit allergies and intolerances
In context ↗ - Light & noise sensitivity
exposure to toxins, light and noise
In context ↗
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