Severe ME/CFS, unable to eat or leave bed, now moderate after acupuncture and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
I think there are other things still going on like ME/CFS and MCAS due to having PEM and/or rolling PEM
In context ↗ - At worst: Severe
I was sleeping 17 hours a day, I couldn’t eat anything, I had lots of heart palpitations, I could’t even balance myself to get out of bed and walk
In context ↗ - Now: Somewhat better
i’ve massively improved from that now, though still moderate ... I am now more moderate, i can typically manage okay at home with some outings at times
- Began after: nothing they could name
I have had the start of all my symptoms 5 years ago
Summary
Crest 35062 fell ill five years ago and started severe: sleeping 17 hours a day, unable to eat or get out of bed, with palpitations and severe migraines. Acupuncture from a Chinese medicine doctor, with hard pacing and rest, eased months of severe nausea and let them eat again, and they slowly improved to moderate. They now pace heavily, manage mostly at home with occasional outings, and were recently diagnosed with POTS.
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What they tried
What they credit
Their words about each treatment
- chinese medicine with acupuncture · Helped
By the end of it, I had my first proper meal i've had in months. The insane nausea I had for months had decreased, and I could actually eat something.
In context ↗ - pacing and lots of rest · Helped
I try to pace incredibly hard, always doing my best to rest the second i get those “i’m pushing too much” sensations in the body and for the most part it seems to work for me.
In context ↗
Approaches: Alternative therapies · Pacing
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 5 years ago | symptoms began and were severe; bedbound, sleeping 17 hours a day, unable to eatI had severe fatigue at the start, I was sleeping 17 hours a dayIn context ↗ | Severe |
| after months of weekly acupuncture | first proper meal in months; months of nausea easedBy the end of it, I had my first proper meal i’ve had in months.In context ↗ | Severe |
| 2025-12-28 | improved to moderate over years; mostly at home with occasional outings, pacing, still flaresI am now more moderate, i can typically manage okay at home with some outings at timesIn context ↗ | Moderate |
Adverse events
- Acupuncture“wow did the acupuncture hurt, it was agony” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
having PEM and/or rolling PEM
In context ↗ - POTS & dysautonomia
with only just recently being diagnosed with POTS
In context ↗ - Sleep problems
I was sleeping 17 hours a day
In context ↗ - Gut problems
The insane nausea I had for months had decreased
In context ↗ - Heart symptoms & palpitations
I had lots of heart palpitations
In context ↗ - Muscle weakness
I could’t even balance myself to get out of bed and walk
In context ↗ - Headaches & migraine
the worst migraines I’ve ever had in my life
In context ↗ - Anxiety & low mood
It’s left a hole in my stomach, I can’t stop thinking about it now and has me quite worried
In context ↗
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