ME/CFS
Severe → no benefit
Entire days in bed with ME/CFS and brain fog, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- years
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
mentioned that all the symptoms fit CFS
In context ↗ - At worst: Severe
my symptoms worsened significantly and I had entire days at a time where I couldn't get out of bed
In context ↗ - Now: No benefit
no matter what I did or tried I just never got my energy levels back up
In context ↗ - Began after: nothing they could name
For years ive felt tired and listless and had no idea why.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
After years of tiredness, insomnia and collapsing after exercise, a Reddit user's symptoms worsened to entire days in bed and they were diagnosed with CFS in 2024. Gym exercise, weight loss, sleep aids, caffeine and Adderall all failed; Adderall gave brief energy then a harder crash and was flushed. They rested and napped four or five times a day while caring for six children, with brain fog limiting time with them and no improvement.
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What they tried
Also tried
weight loss· No changesleep aids· No changecoffee and caffeine pills· No changegoing to a gym 4 times a week· Worseadderall· Worsesignificant rest and naps· Not said
Their words about each treatment
- going to a gym 4 times a week · Worse
I tried going to a gym 4 times a week or so when the kids were in school ... every time I got home I collapsed and was unable to move
In context ↗ - weight loss · No change
They also blamed it on my weight, so I lost weight. 60 lbs down and no improvement.
In context ↗ - sleep aids · No change
I tried sleep aids to help me get more sleep, but I still felt groggy and tired all day even if I slept all night.
In context ↗ - coffee and caffeine pills · No change
I started chugging coffee all day to see if the caffeine would help. It didn't. ... Caffeine pills didn't help either.
In context ↗ - adderall · Worse
One doctor actually gave me a script for adderall to try to keep my energy up. ... I'd crash even harder later.
In context ↗ - significant rest and naps · Not said
I gave up and just decided that I would have to get significant rest before doing anything during the day and give myself over to having to nap 4 or 5 times a day
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 |
|---|---|---|
| — | tired and listless for years; crashes after exerciseFor years ive felt tired and listless and had no idea why.In context ↗ | Mild |
| 2024 | symptoms worsened; entire days unable to get out of bedyears later my symptoms worsened significantly and I had entire days at a time where I couldn't get out of bedIn context ↗ | Severe |
| 2024-08-04 | diagnosed with CFS; still struggling, no improvementI hate knowing it will never get better and I hate knowing I'll never have the old me backIn context ↗ | Severe |
Adverse events
- Amphetamine salts (Adderall)“I would take it and have a little energy during the day, but then I'd crash even harder later.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
every time I got home I collapsed and was unable to move or do anything for the remainder of the day
In context ↗ - Brain fog
brain fog and exhaustion takes over and blocks me from participating further
In context ↗ - Sleep problems
my insomnia was catching up to me
In context ↗ - Anxiety & low mood
I feel incredibly sad and frustrated
In context ↗