ME/CFS
Severe → no benefitIll for 10 years
Worsening ME/CFS with brain fog and heavy limbs, no benefit from stimulants or supplements
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 years
- Last post
- Apr 2021
In their words
- Condition: ME/CFS
I’ve been struggling w/ CFS, IBS, ADHD, RLS, MDD & excessive daytime sleepiness for years now
In context ↗ - At worst: Severe
Were it not for high doses of stims (400mg modafinil *and* 80mg methylphenidate), I’d be mostly bedridden and sleeping 12+ hours per day.
In context ↗ - Now: No benefit
Even with there very high doses, I am still chronically tired.
In context ↗ - Began after: nothing they could name
it’s true that my alleged CFS had a slow progression
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
For almost a decade, Orchid 54573 described a gradually worsening CFS-like illness with brain fog, IBS, excessive sleepiness, heavy limbs and depression, plus ADHD, RLS and treated apnoea. High-dose stimulants, modafinil, probiotics and supplements let them do only minor tasks; they quit math grad school and remained chronically tired. COVID-19 made them worse.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- Ritalin / methylphenidate · Helped
If it were not for Ritalin (80mg/day, mind you), I would be crippled.
In context ↗ - ADs / vortioxetine · Not said
I feel chronic mental and physical fatigue and excessive daytime sleepiness even with methylphenidate and vortioxetine
In context ↗ - CPAP · No change
apnea (treated with CPAP, to no avail)
In context ↗ - modafinil · Not said
to which I have added desperately added modafinil at my own risk
In context ↗ - pharma grade probiotics · Not said
need high doses of stimulants, pharma grade probiotics and dozen supplements daily to be able to do minor daily tasks
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 |
|---|---|---|
| almost a decade before 2021 | gradual onset of CFS-like illnessIt’s been progressing in severity for almost a decadeIn context ↗ | Not stated |
| — | COVID-19 infection crushed them furtherI also had COVID-19 and it crushed me even furtherIn context ↗ | Severe |
| 2021-04-04 | still chronically tired and energy-limited on high-dose stimulantsI have a very, very limited amount of physical and mental energy in a given day and I can’t do the shopping, do the dishes and go for a walk later on.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Brain fog
I have chronic brain fog
In context ↗ - Gut problems
I have chronic IBS symptoms
In context ↗ - Sleep problems
excessive daytime sleepiness even with methylphenidate and vortioxetine
In context ↗ - Anxiety & low mood
diagnosed with ADHD and depression
In context ↗ - Muscle weakness
My legs are chronically heavy and tired
In context ↗ - Pain & fibromyalgia
My arms sometimes get tired and sore from the mere act of writing things down
In context ↗