ME/CFS
Moderate → no benefit
ME/CFS constant malaise and pain, still no fatigue benefit from what she takes
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- May 2026
In their words
- At worst: Moderate
I keep feeling like I am having such difficulty with pacing.
In context ↗ - Now: No benefit
No amount of nervous system reset / polyvagal work ever resets me.
In context ↗
Read from 7 of their posts and comments; links to the 5 this page draws on
Summary
A woman with ME/CFS and POTS, plus hEDS, ADHD and fibromyalgia, describes constant malaise and pain from exhaustion and persistent trouble pacing, with her heart rate reaching 122 on the toilet despite beta blockers. Something she takes helps her pain but not her fatigue, and she uses the TachyMon app to watch her heart-rate limits. She bought a lightweight mobility scooter for about $400. No recovery is described.
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What they tried
Also tried
Their words about each treatment
- LDN · Helped
Helps with my pain but not my fatigue. If anything, I was told to take it in the evening bc it may be sedating.
In context ↗ - beta blockers · No change
Now, even after taking beta blockers every morning and every night, my heart goes to 122 sitting on the toilet to pee.
In context ↗ - ADHD meds · Worse
I struggle with the ADHD meds turning on part of my brain while whatever brain fog due to ME/CFS ... shuts down another part of my brain. It’s a very uncomfortable, disjointed feeling.
In context ↗ - air compression boots · Helped
And I LOVE the air compression boots — what a treat!
In context ↗ - nervous system reset / polyvagal work · No change
No amount of nervous system reset / polyvagal work ever resets me.
In context ↗ - TachyMon app with Apple Watch · Not said
I love the Tachymon app and how I can set my limits — but I very easily go over my first limit
In context ↗ - pacing · Not said
I keep feeling like I am having such difficulty with pacing.
In context ↗ - sedating meds · Not said
I take a few sedating meds at night
In context ↗
Adverse events
- Stimulants (unspecified)“I struggle with the ADHD meds turning on part of my brain while whatever brain fog due to ME/CFS ... shuts down another part of my brain. It’s a very uncomfortable, disjointed feeling. It’s paralyzing” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
since brain fog, ADHD, and perimenopause is making me speak in convoluted sentences
In context ↗ - POTS & dysautonomia
I have POTS as well , like you do
In context ↗ - Pain & fibromyalgia
I feel systemic pain throughout my body from exhaustion itself
In context ↗ - Heart symptoms & palpitations
my heart goes to 122 sitting on the toilet to pee
In context ↗ - Flu-like symptoms
the constant malaise. That poisoned feeling
In context ↗