ME/CFS
Severe → no benefitIll for 6.5 years
Almost bedridden with ME/CFS; now low end of moderate, walking no help and fasting worse
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 6.5 years
- Last post
- Jul 2024
In their words
- Condition: ME/CFS
it’s slow and it doesn’t really help my CFS
In context ↗ - At worst: Severe
I distinctly remember spending weeks almost bedridden, sleeping most of the day and struggling to even stand up with immense dizziness, motion sickness, and fatigue
In context ↗ - Now: No benefit
Over the next 6 years or so my condition has basically slowly got worse
In context ↗ - Began after: another virus
it turned out I actually did have the flu
Read from 13 of their posts and comments; links to the 8 this page draws on
Summary
Sequoia 67430 became ill after flu, then spent weeks almost bedridden with dizziness, motion sickness and fatigue; over five months they improved to almost recovered but remained more easily fatigued. Their condition then slowly worsened over about six years, reaching the low end of moderate by 2024. They walked short distances, which improved fitness but not CFS, and said fasting consistently worsened fatigue, brain fog, dizziness and pain.
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What they tried
Also tried
vitamin D supplements· Helpedwalking short distances· Helpeddamp cloth over eyes· Helpedkeeping eyes closed· Helpeddaily 20 hour fasts· Worsemulti-day fasts· Worsemedication for flu· Not saidpacing / staying within energy limits· Not said
Their words about each treatment
- medication for flu · Not said
I remember taking medication for a few weeks
In context ↗ - vitamin D supplements · Helped
I had vitamin D deficiencies at various points of my life since getting diagnosed and it did make me feel worse until I treated it but it didn’t cure my CFS when I toon supplements.
In context ↗ - walking short distances · Helped
routinely walking short distances over the last 4 years had made me significantly fitter and better at walking then I ever used to be
In context ↗ - daily 20 hour fasts · Worse
Daily 20 hour fasts are agony
In context ↗ - multi-day fasts · Worse
multi-day fasts aren’t good for me either. It makes me so dizzy and sick feeling, it’s just unbearable.
In context ↗ - damp cloth over eyes · Helped
The two things that have helped me is putting a damp cloth over my eyes
In context ↗ - keeping eyes closed · Helped
keeping my eyes closed as much as possible. My eyes sting a lot when I’m exhausted and keeping them shut reduces the pain
In context ↗ - pacing / staying within energy limits · Not said
I still need to be careful with my condition and not push myself past my energy limits
In context ↗
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| after flu | flu followed by weeks almost bedriddenspending weeks almost bedridden, sleeping most of the day and struggling to even stand up with immense dizziness, motion sickness, and fatigueIn context ↗ | Severe |
| 5 months later | improved to almost completely recovered but remained more easily fatiguedThen over the next 5 months it got better until I felt almost completely recoveredIn context ↗ | Near normal |
| 2024-07-16 | slowly worsened to low end of moderateOver the next 6 years or so my condition has basically slowly got worse, going from that very mild state to being more mild, then even to the low end of moderate.In context ↗ | Moderate |
Adverse events
- Intermittent fasting“I fast a lot, and it’s always really bad for me. I get tired, I get dizzy, I get more brain fog, and it hurts so much. Daily 20 hour fasts are agony” In context ↗ Made symptoms worse
- Extended water fasting (3+ days)“multi-day fasts aren’t good for me either. It makes me so dizzy and sick feeling, it’s just unbearable.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
My PEM usually has a pattern but this part is harder to determine
In context ↗ - Brain fog
I get more brain fog
In context ↗ - POTS & dysautonomia
I get tired, I get dizzy, I get more brain fog
In context ↗ - Sleep problems
sleeping most of the day
In context ↗ - Pain & fibromyalgia
it would make my muscles ache a lot
In context ↗ - Vision problems
my eyes stinging and my vision going blurry
In context ↗