Home or bedbound 90% for 8 months with ME/CFS, now much better after slow reconditioning
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Oct 2026
In their words
- At worst: Severe
I spent about eight months after that being home/bedbound 90% of the time
In context ↗ - Now: Much better
I can leave the house for about 2-3 hours 5 days a week but I still have a lot of pain & fatigue, dizziness .
In context ↗ - Began after: glandular fever or EBV
When I was 20, I got mono( I didn't know what it was)
Summary
They got mono at 20 and were left with fatigue and body pain that stayed manageable until POTS began at 27. After 18 months of going out daily and exercising, their capacity declined and eight months were spent home or bedbound 90% of the time. Slow reconditioning, aided by their father's stay, got them out for two to three hours five days a week, though pain, dizziness and muscle weakness remained. A beta blocker made them feel worse.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- beta blocker · Worse
I went on a beta blocker and then I went off it because it made me feel worse.
In context ↗ - exercising / reconditioning · Helped
I was also exercising for about an hour five days a week ... I've been reconditioning slowly
- supplements · Helped
I've tried some supplements and they definitely helped with pain, etc
In context ↗
Approaches: Exercise and activity
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. The chart starts 7 years after onset: the story doesn’t say how ill they were before that. 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 | After |
|---|---|---|---|
| age 20 | mono, ill about three months then better, left with underlying fatigueWhen I was 20, I got mono( I didn't know what it was) and I was sick for about three months and then got better.In context ↗ | Not stated | |
| age 27-29 | POTS came on; after stopping a beta blocker they reconditioned with family to leaving the house 2-4 hours daily and exercising an hour five days a weekI sort of reconditioned to a point where I would leave the house for 2-4 hours every day and I was also exercising for about an hour five days a week.In context ↗ | Mild | Everyday exercise and activity |
| ~2025 | capacity declined over about a yearAnd then I had about a year where it was becoming more reduced capacityIn context ↗ | Moderate | |
| late 2025 to mid 2026 | eight months home or bedbound 90% of the time, leaving the house only 1-2 hours every three daysI spent about eight months after that being home/bedbound 90% of the time.In context ↗ | Severe | |
| 2026-08-21 | slow reconditioning while father stayed, going out about 2 hours a few days a weekcurrently I can go out for about 2 hours a few days a week and that is only because my father is staying with me for a few monthsIn context ↗ | Moderate | Everyday exercise and activity |
| 2026-09-08 | can leave the house 2-3 hours five days a week but still pain, fatigue, dizziness and muscle weaknessI can leave the house for about 2-3 hours 5 days a week but I still have a lot of pain & fatigue, dizzinessIn context ↗ | Mild |
Adverse events
- Beta-blockers (unspecified)“I went on a beta blocker and then I went off it because it made me feel worse” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I still have a lot of pain & fatigue, dizziness
In context ↗ - POTS & dysautonomia
I have pots as well
In context ↗ - Muscle weakness
The one symptom I'm currently dealing with seems to be the muscle weakness which is bothering me more than anything else
In context ↗ - Anxiety & low mood
I feel uncomfortable & my anxiety kicks in
In context ↗
Ask Miruvor AI
Similar stories
-
Long COVID tremors and insomnia, improved on low-histamine diet, then relapsed after a cold
A person over 65 developed long COVID after a COVID infection in November 2020, with loss of smell, insomnia, tremors, myoclonus, burning mouth and severe alcohol and lanolin allergies. A low-histamine diet was the turning point, with mast cell stabilizers,…
-
Often bedbound with long COVID, now almost back to normal after diet and rowing regimen
Osprey 74759 fell ill with long COVID in October 2020 and after about 2.5 years was often bedbound, unable to walk 100 m without near-fainting. In 2023 a self-designed supplement, diet and rowing-machine regimen produced rapid gains: from bedridden to…
-
Long COVID with brain fog and gut problems, now recovered after HRT
A woman who got COVID in December 2021 at age 38 developed long COVID with brain fog, gut problems, SIBO, histamine reactions, hair loss, blood sugar crashes and blood pressure spikes. Fasting, a low-carb diet, supplements, guanfacine, DHEA and nicotine gum…
-
Long COVID with panic, gut problems and dysautonomia; somewhat better with rest and pacing
Prairie 75127 fell ill with long COVID in summer 2020 after a Covid infection in December 2019, with daily panic and anxiety, gut problems and dysautonomia, and could not keep working. They credited time, rest, pacing, meditation, quitting alcohol and…