ME/CFS
Severe → no benefitIll for 9 years
ME/CFS with PEM crashes, now sleeping around the clock, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 9 years
- Last post
- Oct 2024
In their words
- Condition: ME/CFS
I developed CFS during/after my second job.
In context ↗ - At worst: Severe
I'm basically constantly asleep, only waking up to eat or talk to my friends over discord and maybe browse the web for a few hours before I pass back out again
In context ↗ - Now: No benefit
namely that my symptoms seem to have just gotten worse
In context ↗ - Began after: stress or burnout
I think my body went into survival mode during that time
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
A Reddit user with ME/CFS described becoming ill about nine years earlier, after a physically demanding warehouse job, and declining after losing it. By March 2024 they moved around unaided only if they avoided PEM; a few gentle exercises brought a three-day crash. A September 2024 COVID vaccine appeared to stop their medications working for weeks and worsened symptoms, leaving them sleeping around the clock with muscle fatigue and pain.
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What they tried
Also tried
Heated blanket· HelpedSleep Number bed· HelpedSmart watch· HelpedNoise canceling earbuds· HelpedCarved wooden cane· HelpedDuloxetine/Cymbalta· Helpedexercises recommended for people who haven't exercised in years· WorseCOVID vaccination as treatment· Worsecounting calories· Not saidLyrica· Not said
Their words about each treatment
- Heated blanket · Helped
Heated blanket for pain
In context ↗ - Sleep Number bed · Helped
It's helped my pain, and the ability to sit upright in bed with the push of a button is a godsend.
In context ↗ - Smart watch · Helped
Smart watch for monitoring my heart rate, sleep, and activity
In context ↗ - Noise canceling earbuds · Helped
When I'm overwhelmed due to pain, fatigue, sensory overload, etc. it's really helpful to pop them in and let them cancel out all the noise.
In context ↗ - Carved wooden cane · Helped
Carved wooden cane for days when I'm too sore, stiff, or off balance
In context ↗ - exercises recommended for people who haven't exercised in years · Worse
my body absolutely punished me with a PEM episode for the next 3 days
In context ↗ - counting calories · Not said
I just started counting calories this week and I'm actually hitting the recommended range for my weight goals
In context ↗ - Duloxetine/Cymbalta · Helped
my chronic pain has gone down slightly on it ... I notice I hurt a lot more when I've forgotten to take it
In context ↗ - Lyrica · Not said
I'm on Lyrica mostly for my pain
In context ↗ - COVID vaccination as treatment · Worse
my symptoms seem to have just gotten worse
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| ~2015 | health began to decline during a physically demanding warehouse jobmy health started to go downhill towards the end of my second jobIn context ↗ | Mild |
| after losing second job | health kept declining while unemployed; mobility lessenedduring that time my health began to slowly tankIn context ↗ | Moderate |
| 2024-03-04 | three-day PEM crash after a few gentle exercisesmy body absolutely punished me with a PEM episode for the next 3 daysIn context ↗ | Moderate |
| 2024-09-29 | symptoms worsened after new-formula COVID vaccine; sleeping most of the daymy symptoms seem to have just gotten worseIn context ↗ | Severe |
Adverse events
- COVID vaccination as treatment“it seemed as though most of my medications simply stopped working or lost their efficacy” In context ↗ Side effects
- COVID vaccination as treatment“my symptoms seem to have just gotten worse” In context ↗ Made symptoms worse
- COVID vaccination as treatment“The initial covid shots didn't do anything to me aside from make me sick for a day” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogLight & noise sensitivityMuscle weaknessPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
my body absolutely punished me with a PEM episode for the next 3 days
In context ↗ - Sleep problems
I sleep almost around the clock except for like 4-6 hours of being awake
In context ↗ - Pain & fibromyalgia
Chronic pain has increased, of course, combined with the exhaustion
In context ↗ - Muscle weakness
My muscles are fatigued.
In context ↗ - Brain fog
my memory has definitely worsened to the point where I barely remember anything
In context ↗ - Anxiety & low mood
I'm on Duloxetine/Cymbalta for depression
In context ↗ - Light & noise sensitivity
When I'm overwhelmed due to pain, fatigue, sensory overload
In context ↗