ME/CFS
Severe → relapsed
ME/CFS fatigue lifted for weeks, then relapsed and left them bedbound
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Apr 2025
In their words
- At worst: Severe
I've recently gone from being homebound to bedbound.
In context ↗ - Now: Relapsed
There were a few weeks at work last year in the summer where the fatigue completely disappeared ... But it came back with a bang in November 2023
In context ↗
Read from 10 of their posts and comments; links to the 8 this page draws on
Summary
Maria worked with ME/CFS symptoms for an unclear time, with insomnia and mornings so exhausting they would cry; for a few weeks in summer 2023 the fatigue lifted completely. It returned in November 2023 and they have been off work since. They think shingles, then flu with a six-week crash, and house fumigation left them bedbound by November 2024. They found CBT useless and refused GET.
Ask Miruvor AI
What they tried
Their words about each treatment
- pregabalin · Not said
Yeah I had that slightly tipsy feeling with pregabalin. I couldn't walk in a straight line!
In context ↗ - old school antihistamines · Helped
They don't help me fall asleep but once I'm asleep, they keep me asleep for 9 hours, which is unusal for me.
In context ↗ - CBT for CFS · No change
I've already had CBT for CFS and apart from a few useful suggestions on pacing, it was useless.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | ill and still working, with insomnia and exhausting morningsI used to find it impossible to wake up and would be so exhausted I would often cry in the morningIn context ↗ | Mild |
| summer 2023 | fatigue completely disappeared for a few weeks while at workThere were a few weeks at work last year in the summer where the fatigue completely disappearedIn context ↗ | Near normal |
| November 2023 | relapse and went off workit came back with a bang in November 2023 and I've now been off work for a yearIn context ↗ | Moderate |
| summer 2024 | crash after flu, lasting six weeksAfterwards caught the flu and then had a crash that lasted a 6 weeks.In context ↗ | Moderate |
| November 2024 | went from homebound to bedbound after shingles, flu and house fumigationI've recently gone from being homebound to bedbound.In context ↗ | Severe |
Adverse events
- Pregabalin (Lyrica)“Yeah I had that slightly tipsy feeling with pregabalin. I couldn't walk in a straight line!” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Sleep problems
My problem is both falling asleep and staying asleep.
In context ↗ - Post-exertional malaise
On a day to day basis I can potter about for a bit and then all of a sudden I feel really rotten and I need to go lie down.
In context ↗ - Flu-like symptoms
I feel like I'm coming down with a cold or flu when I'm exhausted too.
In context ↗ - Anxiety & low mood
I would often cry in the morning due to tiredness and sheer desperation
In context ↗