Moderate ME/CFS with POTS and dizziness, somewhat better after mindfulness and rest
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
I looked for a chronic fatigue syndrome specialist to diagnose me
In context ↗ - At worst: Moderate
my condition went from mild to moderate
In context ↗ - Now: Somewhat better
My POTS practically disappeared with mindfulness ... I still haven't managed to return to my previous level
- Began after: nothing they could name
I didn't know I had CFS; I thought my exhaustion was caused by my thyroid problems
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
In August 2019 painting her flat triggered a collapse from mild to moderate ME/CFS, with PEM and POTS, and she never returned to her earlier level. In lockdown she could not stand two minutes without dizziness, and broke an ankle fainting on a train. Mindfulness, with two months' rest, made the POTS fade within days and it did not return; she still gets dizzy standing and naps long hours to manage morning work.
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What they tried
What they credit
Also tried
Their words about each treatment
- levothyroxine · Not said
On my own: levothyroxine for hypothyroidism
In context ↗ - naltrexone · Not said
naltrexone for pain
In context ↗ - pentoxifylline · Not said
in the summer, pentoxifylline for restless legs
In context ↗ - vitamin D3 · Helped
vitamin D3 for fibromyalgia (it helps a lot)
In context ↗ - vitamin B1 · Not said
vitamin B1 for incontinence
In context ↗ - repeating "I'm asleep, I'm asleep" · Helped
I would repeat "I'm asleep, I'm asleep." My brain believed it, and I fell asleep.
In context ↗ - naps and resting in silence and darkness · Helped
after lunch I take a nap until my body wakes up naturally ... It's the only way I can manage to get to work.
In context ↗ - mindfulness · Helped a lot
when I started feeling dizzy, I would lie down and meditate ... Within a few days, they began to disappear
In context ↗ - fluoxetine · Worse
I was prescribed fluoxetine; 15 days later, I woke up with the thought that it would be really fun to stab someone
In context ↗ - many vitamins and minerals · Not said
I also rested a lot for two months and took many vitamins and minerals
In context ↗ - resting a lot for two months · Not said
I also rested a lot for two months
In context ↗ - magnesium · Not said
He only prescribed magnesium and melatonin
In context ↗ - paracetamol · Not said
diagnosed fibromyalgia and prescribed paracetamol
In context ↗ - antibiotics · Worse
Taking more antibiotics, apart from giving me diarrhea, doesn't prevent more from appearing.
In context ↗
Approaches: Mind-body practices
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | mild ME/CFS for years, exhaustion blamed on thyroidI didn't know I had CFS; I thought my exhaustion was caused by my thyroid problemsIn context ↗ | Mild | |
| August 2019 | collapsed after painting her flat on vacation; went from mild to moderate, developed PEM and POTSThis triggered such a severe collapse that I had suicidal thoughts ... and my condition went from mild to moderate.In context ↗ | Moderate | |
| during the lockdown | perpetual POTS; could not stand two minutes without dizziness, nausea, chills and blackoutI couldn't stand for even two minutes without experiencing dizziness, nausea, chills, and seeing everything black.In context ↗ | Moderate | |
| during the lockdown | POTS faded within days of mindful meditation and did not returnMy POTS disappeared with mild mindfulnessIn context ↗ | Moderate | Meditation, yoga, breathwork |
| 2025-11-23 | works mornings, long afternoon and evening naps, still gets PEMI work in the morning, and after lunch I take a nap until my body wakes up naturally. ... It's the only way I can manage to get to work.In context ↗ | Mild |
Adverse events
- Fluoxetine (Prozac)“15 days later, I woke up with the thought that it would be really fun to stab someone. I had that thought in my head for hours.” In context ↗ Mood or psychiatric effects
- Antibiotics (unspecified)“Taking more antibiotics, apart from giving me diarrhea, doesn't prevent more from appearing.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I usually have PEM, so I lie in silence and darkness
In context ↗ - POTS & dysautonomia
I still get a little dizzy if I stand for a while without walking
In context ↗ - Sleep problems
I used to have terrible insomnia
In context ↗ - Pain & fibromyalgia
a rheumatologist who diagnosed fibromyalgia and prescribed paracetamol
In context ↗ - Anxiety & low mood
I was very depressed and needed to talk to someone
In context ↗ - Temperature regulation
dizziness, nausea, chills, and seeing everything black
In context ↗ - Gut problems
Taking more antibiotics, apart from giving me diarrhea
In context ↗
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