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ME/CFS Severe → much betterIll 2 years before improving or writing

ME/CFS: hardly able to do anything at worst, now much better and mild

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill before improving or writing
2 years
Last post
Jan 2025
In their words
  • Condition: ME/CFSI've been dealing with what I heavily think is cfs In context ↗
  • At worst: SevereI could hardly do anything. Living alone I had to drag myself on the floor if I wanted to do anything In context ↗
  • Now: Much betterI crashed really hard at first and somehow recovered to the point that I'm fairly mild now. Still not mild enough to live a normal life In context ↗
  • Began after: stress or burnoutI pushed through tons of things and the stress plus a whole lot of factors ended up with me getting sick
Read from 11 of their posts and comments; links to the 8 this page draws on

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Summary

Hare 69088 was 17, working as an aircraft mechanic, when they collapsed from exhaustion and had to quit; at first they could hardly do anything and had to drag themselves on the floor to get food. They improved over the next year to a mild level: they can paint or play games for about two hours but need the rest of the day to recover. By early 2025 they were still only fairly mild, unable to work or study, and pacing to avoid crashing again.

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What they tried

What they credit

Their words about each treatment
  • stimulants · Not saidI'm already on stimulants. In context ↗
  • antidepressants · No changeThat and antidepressants which according to my doctor should give me energy... which it obviously dosen't. In context ↗
  • rest · No changeI wouldn't say rest helps a lot. The main thing it does is make me stop and not making the symptoms worse. In context ↗
  • pacing · HelpedI've made my own pacing which allows me to rest and do a few things. In context ↗
  • vitamins · No changeI know everyone wanted to cure me with them but I didnt see a significant difference. In context ↗
  • sunlight · HelpedMaybe its only placebo but sunlight does give a little something. In context ↗

Approaches: Pacing

Their path

Very severeSevereModerateMildNear normalRecoveredonset6 mo12 mo18 mo2 y

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 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
WhenWhat happenedWhere they were
2022collapsed at work as an aircraft mechanic after months of pushing through stress and physical labourI used to do aircraft mechanics when i basically just collapsed. That was a year ago. At first I could hardly do anything. Living alone I had to drag myself on the floor if I wanted to do anything. In context ↗Severe
2023-11improved to mild over the first year, able to do things for about two hours before needing the afternoon to recoverNow, a year after the initial crash I am doing somewhat better. ... I can get out of bed and have a daily routine and do things I love (although for a max of 2 hrs 3 if I push it) then usually requires the whole afternoon to recover. In context ↗Mild
2023-12crashed after overdoing itif I overdo it. Which I did not too long ago. Things will get worse. And a lot worse too. In context ↗Not stated
2025-01fairly mild but still not able to live a normal lifesomehow recovered to the point that I'm fairly mild now. Still not mild enough to live a normal life In context ↗Mild

Symptoms mentioned

Their words about their symptoms
  • Brain fogMy brain is soup and headaches and pain are day to day things. In context ↗
  • Headaches & migraineheadaches and pain are day to day things In context ↗
  • Muscle weaknessI still feel fatigued and heavy In context ↗
  • Post-exertional malaisethen usually requires the whole afternoon to recover In context ↗
  • Anxiety & low moodI had a depression for a while In context ↗

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