Housebound then bedridden with ME/CFS, improved on gabapentin then relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- most of my life
- Last post
- Apr 2025
In their words
- Condition: ME/CFS
My GP suspects CFS.
In context ↗ - At worst: Severe
becoming bad enough that I was housebound then bedridden for some months last year
In context ↗ - Now: Relapsed
Things got better with Gabapentin ... I've rapidly declined and feel its getting worse.
- Began after: nothing they could name
I've been chronically ill most of my life
Summary
Chronically ill since youth and mildly to moderately limited, the Reddit user was housebound then bedridden for months in 2024 before gabapentin helped. In April 2025 they reported a rapid decline: crashes starting within half an hour of exertion, muscle spasms and paralysis-like episodes, severe light sensitivity and headaches, and heavy, foggy days. Rest no longer felt restorative and washing or using the toilet became exhausting.
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What they tried
What they credit
Their words about each treatment
- Gabapentin · Helped
Things got better with Gabapentin and now im not sure I get PEM anymore - but I crash if I overdo things.
In context ↗ - Reducing mental and physical activity · No change
I reduced my mental activity by 2/3rds and my physical activity by 4/5ths last week, but I kept having short lived but very scary crashes.
In context ↗
Approaches: Other drugs and medicines
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 |
|---|---|---|
| most of my youth | chronically ill since youth, mild to moderateI was somewhere between mild and moderate for most of my youth.In context ↗ | Mild |
| last year | relapse after a brief remission; housebound then bedriddenI had a brief remission and it came back two years ago, becoming bad enough that I was housebound then bedridden for some months last year.In context ↗ | Severe |
| early 2025 | improved on gabapentin; crashing only if overdoing thingsThings got better with Gabapentin and now im not sure I get PEM anymore - but I crash if I overdo things. ... I was mild (but still unable to work at all) just two weeks ago. | Mild |
| 2025-04-04 | worsening crashes: drooling, muscle spasms, paralysis-like episodes, light sensitivitySince then, I've got worse.In context ↗ | Mild |
| 2025-04-10 | rapid decline; rest no longer restorative; exhausted by washing and the toiletI've rapidly declined and feel its getting worse. ... I've started feeling like its exhausting to use the toilet and wash myself again.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I crash if I overdo things.
In context ↗ - Brain fog
I don't feel much of anything during a crash because I'm so foggy.
In context ↗ - Light & noise sensitivity
I now have constant, severe light sensitivity, headaches
In context ↗ - Muscle weakness
My body is heavy, clumsy, unbalanced, foggy
In context ↗ - Sleep problems
sleeping far more
In context ↗ - Breathlessness
stop feeling like I can move some parts of my body and stop being able to breathe
In context ↗ - Vision problems
my recent onset eye issues during crashes
In context ↗
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