ME/CFS
Moderate → no benefitIll for 18 years
Ill with ME/CFS for 18 years, crashes leave them in bed for days; now living day by day
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 18 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
sometime i wish my cfs-me-fibromyalgia was so much worse to force me 24 hours in bed
In context ↗ - At worst: Moderate
sometimes yes happens i feel a little bit better, i can even drive them to some place, take to the market, do some housechores, cycling
In context ↗ - Now: No benefit
18 years of suffering, i know the feeling, an endless struggle
In context ↗
Summary
A Reddit user ill for 18 years with ME/CFS and fibromyalgia described crashes that put them in bed for 2-3 days whenever they pushed. Almost ten years ago an unnamed medicine helped a little with rest and balance but left them sleepy, moody and not themselves, so they stopped. They had given up on doctors and medicines, living day by day and avoiding pushing, with rare better days when they could drive, shop or cycle.
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What they tried
Also tried
Not pushing / avoiding adrenaline· Helpedmedicine· Worse
Their words about each treatment
- medicine · Worse
i tried some for a couple of months, at that time i couldnt sleep even 3 hours at night, so i took them
In context ↗ - Not pushing / avoiding adrenaline · Helped
Not pushing, especially not relying on adrenaline , in fact avoid at all costs
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| about 2008 | onset of ME/CFS and fibromyalgia18 years of suffering, i know the feeling, an endless struggleIn context ↗ | Not stated |
| about 2016 (10 years before writing) | took an unnamed medicine for a couple of months and got some balance and rest backi took them, in some ways helped me in finding a little balance and rest backIn context ↗ | Not stated |
| 2026-10-06 | living day by day, giving up on medicine and avoiding pushingnowdays I just live day by dayIn context ↗ | Moderate |
Adverse events
- “i proved in the past that medicines made everything only worse” In context ↗ Made symptoms worse
- “in the long run made me feel sleepy all the time” In context ↗ Side effects
- “moody, altered, not real myself” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
whenever i try to push a little, i end up laying in bed the entire time for at least 2-3 days due to a crash
In context ↗ - Sleep problems
at that time i couldnt sleep even 3 hours at night
In context ↗ - Pain & fibromyalgia
my cfs-me-fibromyalgia
In context ↗