ME/CFS after COVID, unable to get out of bed, now somewhat better with self-care
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 1 year
- Last post
- Jan 2024
In their words
- Condition: ME/CFS
I have pots, me, eds etc and it all kicked off last year after covid.
In context ↗ - At worst: Very severe
I was a complete mess who couldn’t get out of bed, couldn’t even go to the bathroom
In context ↗ - Now: Somewhat better
until about 3 months ago when i did the above and started to get better
In context ↗ - Began after: COVID
it all kicked off last year after covid
Summary
Gull 72026 developed ME/CFS, POTS and EDS after COVID in 2023 and could not get out of bed or to the bathroom. About three months before writing they began broad self-care — low-histamine diet, minerals and vitamins, probiotics, slow mild exercise, breathing work and therapy — and started to get better. A histamine diet seemed to help, and they had tried one painful zinc 'b-spot' treatment in Japan once.
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What they tried
What they credit
Also tried
Their words about each treatment
- low histamine diet · Helped
I only learned about histamines a week ago and it's not perfect, but I think it's helping.
In context ↗ - potassium and magnesium · Helped
Keeping potassium, magnesium, D and B vitamins up.
In context ↗ - probiotics · Helped
Take probiotics, build yourself up through slow mild exercise.
In context ↗ - slow mild exercise · Helped
build yourself up through slow mild exercise.
In context ↗ - breathing exercises · Helped
Learn hot to breathe properly.
In context ↗ - Kanpo (Kracie T-7) · Not said
The one I was prescribed in Japan is 「めまい、立ちくらみに T-7」by a brand called Kracie.
In context ↗ - b-spot treatment (zinc swab to throat) · Not said
I reluctantly did it once, and holy shit, what a horrible awkward pain that was.
In context ↗
Approaches: Diet · Mind-body practices · Physiotherapy and rehab · Supplements
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 |
|---|---|---|
| 2023 | illness began after COVIDI have pots, me, eds etc and it all kicked off last year after covid. I was a complete mess who couldn't get out of bed, couldn't even go to the bathroomIn context ↗ | Very severe |
| about 3 months before 2024-01-20 | began broad self-care (diet, supplements, probiotics, slow exercise, breathing, therapy) and started to get betteruntil about 3 months ago when i did the above and started to get betterIn context ↗ | Moderate |
| 2024-01-20 | still improving, low-histamine diet helpingI only learned about histamines a week ago and it's not perfect, but I think it's helping.In context ↗ | Moderate |
Adverse events
- “I reluctantly did it once, and holy shit, what a horrible awkward pain that was.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
I have pots, me, eds etc
In context ↗
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