ME/CFS with bedbound days, now somewhat better mentally on stimulants and guanfacine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
having CFS with a hyperactive condition is a nightmare. I might be bedbound but that won’t stop my brain from being hyperactive!
In context ↗ - At worst: Severe
I might be bedbound but that won’t stop my brain from being hyperactive!
In context ↗ - Now: Somewhat better
While I still have severe fatigue, reducing the brain hyperactivity has been amazing for my mental energy.
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Petrel 25492 had CFS since long before covid, with bedbound days, post-exertional crashes and brain fog, plus combined ADHD. Low-dose extended-release stimulants and guanfacine, taken daily, quietened the ADHD brain hyperactivity, improved short-term memory and mental fatigue, and let them rest at night. They remained exhausted and often in bed, but with far better mental energy.
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What they tried
What they credit
Their words about each treatment
- Matcha · Helped
Matcha helps give me some get-up-and-go when I’m crashed out
In context ↗ - stimulants · Helped
I take two low-dose XR stimulants plus Guanfacine, which helps brain fog and improves short-term memory, mental fatigue.
In context ↗ - Magnesium · Helped
Magnesium in the AM and electrolytes during the day (plus a small amount before bed during flares) have completely solved this for me :)
In context ↗ - antihistamines · Helped
many patients find their interstitial cystitis symptoms are reduced by taking a regular routine of antihistamines ... It worked for me so I’d recommend trying it if you haven’t already!
In context ↗ - XR Guanfacine · Helped a lot
XR Guanfacine was life-changing for me. ... reducing the brain hyperactivity has been amazing for my mental energy
In context ↗
Approaches: Other drugs and medicines · Stimulants
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 | After |
|---|---|---|---|
| long before covid | CFS began, long before covidsomebody who developed CFS long before covidIn context ↗ | Not stated | |
| 2024-11-02 | bedbound days with a hyperactive brainI might be bedbound but that won’t stop my brain from being hyperactive!In context ↗ | Severe | |
| 2025-07-16 | guanfacine plus stimulants quietened brain hyperactivity and improved memoryXR Guanfacine was life-changing for me.In context ↗ | Severe | Guanfacine |
| 2025-08-22 | still exhausted and often in bed, but mentally clearer on low-dose stimulants and guanfacineMy CFS is bad enough that I’m going to be exhausted regardless.In context ↗ | Severe |
Adverse events
- Guanfacine“Too early and it’ll send me to sleep, too late and the BP drop hits too hard.” In context ↗ Side effects
- Guanfacine“Too early and it’ll send me to sleep, too late and the BP drop hits too hard.” In context ↗ Low blood pressure or fainting
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
the hyperactive ADHD that makes me go way past all my limits because I want to “maximize my energy” and end up stuck in bed the next day
In context ↗ - Brain fog
Guanfacine, which helps brain fog and improves short-term memory, mental fatigue.
In context ↗ - POTS & dysautonomia
Magnesium in the AM and electrolytes during the day (plus a small amount before bed during flares) have completely solved this for me :)
In context ↗ - Sleep problems
leave me with a hyperactive ADHD brain just before bedtime was honestly hell
In context ↗
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