ME/CFS
Severe → no benefit
Bedbound 23 hours a day with ME/CFS, recent treatment brought no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
Yeppp ME & POTS
In context ↗ - At worst: Severe
I'm currently severe and bedbound 23h/day
In context ↗ - Now: No benefit
I'm bedbound 23h/day and my ONLY chance at mobility is a powerchair
In context ↗
Read from 17 of their posts and comments; links to the 12 this page draws on
Summary
A Reddit user with ME/CFS and POTS described becoming severe and bedbound 23 hours a day, able to move around only in a powerchair for the past three months. He managed sensory overload with noise-cancelling headphones, earplugs and pacing by heart rate on a Garmin watch. He recently started a treatment and slept through the night, though mornings were groggier; he said it was too soon to tell if it helped.
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What they tried
Also tried
Venu 4· Helpedwrist braces with iron rods· Helpedelectrolytes· HelpedSony XM5 headphones· HelpedLoop earplugs· HelpedWhoop 4.0· No changeFatigueSense· No changeblackout sleep mask· WorseWheelchair (manual or powered)· WorseAmitriptyline· Not said
Their words about each treatment
- blackout sleep mask · Worse
I got one myself. I want to like it. But I get super dizzy with this on :(
In context ↗ - Whoop 4.0 · No change
The data was alright. I eventually cancelled because of the subscription model. For pacing? Personally 0/10.
In context ↗ - Venu 4 · Helped
As much as I dislike the UI and the look in general, it gives me all I need. And it helps me stay within my limits.
In context ↗ - wrist braces with iron rods · Helped
What help manage the pain for me are proper wrist braces with iron rods in them.
In context ↗ - FatigueSense · No change
So far not helpful. Had to turn off all notifications, it was getting ridiculous.
In context ↗ - Amitriptyline · Not said
Taking it now but just started a few days ago. So too soon to tell.
In context ↗ - electrolytes · Helped
a ton of electrolytes
In context ↗ - Sony XM5 headphones · Helped
the xm5-s are comfortable for me (14+h/day) and the noise cancellation is really good
In context ↗ - Loop earplugs · Helped
Eventually I gave Loop Dream a go, and honestly they're way better than quiet 2 were.
In context ↗ - Wheelchair (manual or powered) · Worse
I have a lower-end powerchair and I feel it destroying my body every time I use it.
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | got sick, bought a Whoop to work out what was happeningWhen I first got sick, I got a Whoop 4.0. I didn't know I had ME back then.In context ↗ | Not stated |
| 2026-06 | became bedbound and dependent on a powerchair to move at allit's the only way I've been able to move around in the past 3 months. Even if it's just for bathroom.In context ↗ | Severe |
| 2026-09-25 | still bedbound 23 hours a day, powerchair the only mobilityFor reference I'm bedbound 23h/day and my ONLY chance at mobility is a powerchair.In context ↗ | Severe |
Adverse events
- “I got one myself. I want to like it. But I get super dizzy with this on :(” In context ↗ Side effects
- Amitriptyline (Elavil)“Con: morning groggyness is definetly worse, which i didn't know was even possible” In context ↗ Side effects
- Wheelchair (manual or powered)“I have a lower-end powerchair and I feel it destroying my body every time I use it.” In context ↗ Made symptoms worse
Symptoms mentioned
Headaches & migraineLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I definetly PEM from sound alone
In context ↗ - POTS & dysautonomia
Yeppp ME & POTS and technically ambulatory in a powerchair
In context ↗ - Light & noise sensitivity
Decent set of ANC headphones (absolute necessity. I definetly PEM from sound alone)
In context ↗ - Sleep problems
Pro: started sleeping through the night
In context ↗ - Pain & fibromyalgia
What help manage the pain for me are proper wrist braces with iron rods in them.
In context ↗ - Temperature regulation
I have a very hard time regulating body temperature already
In context ↗ - Headaches & migraine
The gel migraine masks are quite distracting indeed. But mine only stays cold for 8 minutes or so
In context ↗