Exhausted by walking to the bathroom, now on the edge of severe with ME/CFS
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 years
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
I explained “Push and Crash” to my brother who two weeks later told me I needed to get some exercise.
In context ↗ - At worst: Severe
I’m on the edge of severe now because I tried to meet the expectations of non-believers and my skeptical self.
In context ↗ - Now: No benefit
I’m on the edge of severe now because I tried to meet the expectations of non-believers and my skeptical self.
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Ten years into ME/CFS, they could still work about six hours remotely on good days, though at bad times walking to the bathroom exhausted them and they ached all over. Wellbutrin brought them 'back from the edge' and beta blockers stabilised inappropriate sinus tachycardia. After a physiotherapist made them walk and a doctor recommended GET, pushing to meet others' expectations left them 'on the edge of severe' by April 2026.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- Wellbutrin · Helped a lot
Wellbutrin brought me back from the edge. 100mg is a very small dose. I started at 150.
In context ↗ - stopping immediately and resting / lying down · Helped
Generally lying down gives me some relief ... I’ve learned the hard way to stop IMMEDIATELY and rest.
In context ↗ - beta blockers · Helped
I have inappropriate (love that) sinus tachycardia — my heart rate goes way up on minor things, but with beta blockers, it’s stable.
In context ↗ - psychologist · Not said
I’ve gotten help from a psychologist
In context ↗ - functional nutritionist · Not said
and a functional nutritionist
In context ↗ - GET (graded exercise therapy) / being made to walk by a PT · Much worse
I had a PT take me out of the office to make me walk. ... After ten years, my doctor recommended GET.
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. The chart starts 8.7 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| onset | onset of ME/CFSAfter ten years, my doctor recommended GET.In context ↗ | Not stated |
| 2024-12-30 | steady baseline: six hours of remote work on good daysAs I improve some, I can do one ten-minute saunter with my dog. ... On good days I can run errands, shower, keep my house neat, and work about six hours remotely.In context ↗ | Mild |
| 2024-12-30 | nine-day flare with pain and exhaustionSimply walking to the bathroom exhausts me.In context ↗ | Severe |
| 2026-04-11 | decline after physiotherapist-led walking and doctor-recommended GETI’m on the edge of severe now because I tried to meet the expectations of non-believers and my skeptical self.In context ↗ | Severe |
Adverse events
- Graded exercise therapy (GET)“I had a PT take me out of the office to make me walk. ... I’m on the edge of severe now because I tried to meet the expectations of non-believers” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I explained “Push and Crash” to my brother who two weeks later told me I needed to get some exercise.
In context ↗ - Pain & fibromyalgia
I ache everywhere ... I have joint pain
In context ↗ - Muscle weakness
My limbs feel like they weigh a ton.
In context ↗ - Temperature regulation
I get that flu-like chilling.
In context ↗ - Heart symptoms & palpitations
I have inappropriate (love that) sinus tachycardia — my heart rate goes way up on minor things
In context ↗