ME/CFS
Severe → no benefitIll for 3 years
Bedridden with ME/CFS after a crash, now no improvement and crashes past 600 steps
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 3 years
- Last post
- Mar 2025
In their words
- Condition: ME/CFS
I thought I had ME/CFS and I think I did
In context ↗ - At worst: Severe
I am in a severe condition, where I sit in bed 95% of the day.
In context ↗ - Now: No benefit
now im lying on my bed all day long, If i do more than 600 steps, i crash... 45 days.
In context ↗ - Began after: stress or burnout
it was a psychological illness (panic disorder) and a history of tramadol dependence (small doses for several years) that led me to this illness
Read from 15 of their posts and comments; links to the 11 this page draws on
Summary
A French man of 40 dated years of nagging fatigue to about 2022, after panic disorder, tramadol use and heavy sport. He kept cycling and weight-training until early 2025, when post-exertional crashes left him unable to work normally. A week of rest helped briefly, but a February crash left him bedridden; two days of 10 mg fluoxetine made him worse, and he crashes after more than 600 steps a day.
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What they tried
Also tried
Their words about each treatment
- Sport (cycling, weight training, walking) · Worse
This allowed me to calm my dysautonomia but it accentuated my already present chronic and post-exertion fatigue
In context ↗ - tramadol · Worse
tramadol for energy with exhausting withdrawal
In context ↗ - salt and a support sock · Helped
I manage my little dysautonomia with salt and a support sock
In context ↗ - rest / stopping intensive exercise · Helped
I haven't done any intensive exercise for a week and I feel better
In context ↗ - fluoxetine (prozac) · Worse
I wanted to try fluoxetine in a mini dose, but I crashed even more last Thursday
In context ↗ - benzo (anxiolytics) · Helped
had to take half a benzo to get back to sleep with difficulty
In context ↗
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2022 | nagging fatigue began while still playing sportsI've had nagging fatigue for years, although I haven't stopped playing sportsIn context ↗ | Mild | |
| 2023 | remission, in Olympic shapeTwo years ago I was even in Olympic shape, despite the fact that I had this tired for a year.In context ↗ | Near normal | |
| early 2023 | big panic attack after sleepless night, cocaine, sport and alcoholI was in remission then I did anything (sleepless night, cocaine, sport the next day, alcohol) and bam big panic attack which led to this chronic fatigue.In context ↗ | Mild | |
| September 2024 | caught COVID and kept doing sport; gradual declinemoderate/mild past june then i caught covid in september an i keep doing sportIn context ↗ | Mild | |
| early February 2025 | post-exertional crashes after sport; could not work normallythe day after or two days after sport, I have had the flu, terrible fatigue, depression, terrible cold and I cannot work normallyIn context ↗ | Moderate | |
| 12 February 2025 | stopped intensive exercise and felt better, working almost full daysI haven't done any intensive exercise for a week and I feel better ... I can work (I'm a book editor and I have a very, very cognitively demanding job) at almost 100% all day.In context ↗ | Mild | Pacing and the energy envelope |
| 5 March 2025 | crashed to bedridden, in bed 95% of the dayI am in a severe condition, where I sit in bed 95% of the day.In context ↗ | Severe | |
| 10 March 2025 | crashed further after a mini dose of fluoxetineI wanted to try fluoxetine in a mini dose, but I crashed even more last Thursday ... I only get up to go to the toilet since this morning, I'm completely destroyed.In context ↗ | Severe | |
| 18 March 2025 | still lying in bed all day, crashing after more than 600 stepsNow im lying on my bed all day long, If i do more than 600 steps, i crashIn context ↗ | Severe |
Adverse events
- Fluoxetine (Prozac)“I woke up at 2:30 a.m. (put to bed at 11:30 a.m.) and had to take half a benzo to get back to sleep with difficulty.” In context ↗ Insomnia from treatment
- Fluoxetine (Prozac)“I started fluoxetine, two days of taking 10 mg (half dose) and I can't stand it, it excites my sympathetic nervous system too much” In context ↗ Side effects
- Fluoxetine (Prozac)“I wanted to try fluoxetine in a mini dose, but I crashed even more last Thursday...” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
I have had the flu, terrible fatigue, depression, terrible cold and I cannot work normally.
In context ↗ - POTS & dysautonomia
I also have dysautonomia, but it calms down when I'm not crashing
In context ↗ - Sleep problems
a waking up at 3:30 a.m., waking up tired
In context ↗ - Brain fog
it took away the brain fog and gave me energy
In context ↗ - Headaches & migraine
slight standing pain, migraines and tinnitus
In context ↗ - Pain & fibromyalgia
5 minutes of walking hurts my legs and calves
In context ↗ - Muscle weakness
my legs have been heavy and weird for a month
In context ↗ - Anxiety & low mood
I talk to my wife about euthanasia, I'm ashamed to make her panic...
In context ↗ - Flu-like symptoms
yesterday I was dead, I had the flu, today I'm already better
In context ↗