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ME/CFS Severe → relapsed

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/CFSMy GP suspects CFS. In context ↗
  • At worst: Severebecoming bad enough that I was housebound then bedridden for some months last year In context ↗
  • Now: RelapsedThings got better with Gabapentin ... I've rapidly declined and feel its getting worse.
  • Began after: nothing they could nameI've been chronically ill most of my life
Read from 2 of their posts and comments; links to the 2 this page draws on

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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

Their words about each treatment
  • Gabapentin · HelpedThings 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 changeI 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

Very severeSevereModerateMildNear normalRecovered

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
WhenWhat happenedWhere they were
most of my youthchronically ill since youth, mild to moderateI was somewhere between mild and moderate for most of my youth. In context ↗Mild
last yearrelapse 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 2025improved 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
2025-04-04worsening crashes: drooling, muscle spasms, paralysis-like episodes, light sensitivitySince then, I've got worse. In context ↗Mild
2025-04-10rapid 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 malaiseI crash if I overdo things. In context ↗
  • Brain fogI don't feel much of anything during a crash because I'm so foggy. In context ↗
  • Light & noise sensitivityI now have constant, severe light sensitivity, headaches In context ↗
  • Muscle weaknessMy body is heavy, clumsy, unbalanced, foggy In context ↗
  • Sleep problemssleeping far more In context ↗
  • Breathlessnessstop feeling like I can move some parts of my body and stop being able to breathe In context ↗
  • Vision problemsmy recent onset eye issues during crashes In context ↗

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