ME/CFS
Severe → no benefitIll for 9 years
ME/CFS since high school, now almost housebound and unable to work, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 9 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
ME/CFS getting worse.
In context ↗ - At worst: Severe
I'm too severe to work or go to school, and I'm basically housebound most of the time.
In context ↗ - Now: No benefit
ME/CFS getting worse.
In context ↗ - Began after: nothing they could name
Been sick since... around maybe the beginning of when I started high school? I'm 23 now, and things have gradually gotten worse over time.
In context ↗
Summary
Petrel 66695, 23, fell ill at the start of high school and declined gradually from attending school, drawing and walking to almost housebound and unable to work or study. A February 2025 ear infection left chronic cough, shortness of breath and air hunger; an April collapse at Costco left them barely able to breathe. Walking forced by their mother repeatedly triggered rolling PEM and a lower baseline. They remained almost housebound, walking only short distances.
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What they tried
Also tried
inhaler· Helpednasal spray· Helpedtrazodone· Worseforced walking / exercise· Much worseantibiotics· Not saidHRT· Not said
Their words about each treatment
- antibiotics · Not said
Around maybe February of this year or so, I ended up developing an ear infection- Was pretty awful, and I had to go on pretty strong antibiotics to fend it off.
In context ↗ - forced walking / exercise · Much worse
to the point of forcing me up, which has reduced my baseline severely
In context ↗ - trazodone · Worse
been having issues with balancing and tremors that have gotten much worse this year since I started trazodone around late last year
In context ↗ - inhaler · Helped
Been prescribed an inhaler and nasal spray that helps a bit with the breathing troubles
In context ↗ - HRT · Not said
She's also tried to blame this on me getting covid vaccines, or getting HRT
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 |
|---|---|---|
| beginning of high school | illness began during high schoolBeen sick since... around maybe the beginning of when I started high school? I'm 23 now, and things have gradually gotten worse over time.In context ↗ | Mild |
| a year or two ago | gradual decline: could still draw, walk and voice chat on good daysA year or two ago, i could draw, take walks, and happily voice chat with my friends on discord on my good days- but now i really only have the capacity for short check-in messagesIn context ↗ | Mild |
| February 2025 | ear infection followed by chronic cough, shortness of breath and air hungerAround maybe February of this year or so, I ended up developing an ear infection ... Ended up developing a chronic cough, shortness of breath, and almost constant air hunger soon after.In context ↗ | Moderate |
| April 2025 | collapsed at Costco from overexertion, barely able to breatheMy memory is fuzzy, but I basically wound up collapsing, barely able to breathe.In context ↗ | Severe |
| May 2025 | too severe to work or study, basically housebound, walking only short distancesI'm too severe to work or go to school, and I'm basically housebound most of the time.In context ↗ | Severe |
Adverse events
- Trazodone (Desyrel)“I've been having issues with balancing and tremors that have gotten much worse this year since I started trazodone around late last year, I believe?” In context ↗ Side effects
- Everyday exercise and activity“I went out with her yesterday and have been extremely exhausted since.” In context ↗ Made symptoms worse
- Everyday exercise and activity“I feel a little good afterwards, but then I crash hard.” In context ↗ Made symptoms worse
- Everyday exercise and activity“forcing me to walk around or do things, causing me awful rolling PEM” In context ↗ Made symptoms worse
- Everyday exercise and activity“sometimes even physically trying to force me up out of bed to walk around. this has *absolutely* worsened my baseline.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I feel a little good afterwards, but then I crash hard.
In context ↗ - Breathlessness
Ended up developing a chronic cough, shortness of breath, and almost constant air hunger soon after.
In context ↗ - Muscle weakness
I got too weak to walk properly- Had to lean on things for support.
In context ↗ - Brain fog
My memory is fuzzy
In context ↗ - Anxiety & low mood
wondering if I'm going to die
In context ↗ - POTS & dysautonomia
I've been having issues with balancing and tremors that have gotten much worse this year
In context ↗