Bed-bound most of the time with ME/CFS, no improvement from drug or surgery
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 years
- Last post
- Jun 2025
In their words
- Condition: ME/CFS
been struggling with CFS-like symptoms for ten years
In context ↗ - At worst: Severe
I'm on a disability leave from work and spend most of my time bed-bound.
In context ↗ - Now: No benefit
it's been literally a decade now struggling with this, and it feels like it worsens all the time
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Gull 13087 had CFS-like symptoms for a decade that kept worsening; by mid-2025 she was on disability leave, bed-bound most of the time, in constant pain and sleeping badly. A drug tried for suspected myasthenia gravis gave no improvement. Wisdom teeth surgery under general anaesthesia in June 2025 took a little over a week to recover from, leaving her back at her baseline.
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What they tried
Also tried
Their words about each treatment
- run laps around our massive front yard · Worse
my mom had me run laps around our massive front yard ... saying that I was just out of shape ... you can imagine how that went
In context ↗ - wisdom teeth surgery under general anesthesia · Worse
by the day I was cleared to lie down normally, my body was in horrendous shape ... Back to my baseline now! It took a little over a week for me.
- a medication for what we thought was going on (myasthenia gravis) · No change
i was put on a medication for what we thought was going on (myasthenia gravis), but there's been zero improvement
In context ↗ - heart meds · Not said
I was having some major bleeding and swelling due to heart meds I was on
In context ↗ - Versed · Not said
they gave me a tiny bit of Versed right before the actual anesthesia
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. The chart starts 10 years after onset: the story doesn’t say how ill they were before that. 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
| When | What happened | Where they were |
|---|---|---|
| onset | onset of CFS-like symptoms, worsening over the yearsit's been literally a decade now struggling with this, and it feels like it worsens all the timeIn context ↗ | Not stated |
| 2025-05-31 | rock bottom: bed-bound most of the time, on disability leave, hopelessI'm on a disability leave from work and spend most of my time bed-bound.In context ↗ | Severe |
| June 2025 | wisdom teeth surgery under general anaesthesia; crashMine was wisdom teeth surgery, but more intensive than a standard extraction because I have a cardiac issueIn context ↗ | Severe |
| 2025-06-20 | back to baseline about a week after surgeryBack to my baseline now! It took a little over a week for me.In context ↗ | Severe |
Adverse events
- “I was having some major bleeding and swelling due to heart meds I was on” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
my memory is shot because of the brain fog
In context ↗ - Pain & fibromyalgia
i'm in constant pain
In context ↗ - Sleep problems
i can't remember the last time i felt like i actually slept
In context ↗ - Anxiety & low mood
feeling really depressed about it and I don't know how to feel better
In context ↗ - Post-exertional malaise
With CFS/ME it CAN cause a crash, but that’s mainly because it’s coupled with the body stress of surgery.
In context ↗