Housebound with ME/CFS, now much better after dysautonomia treatment and building stamina
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
I have a CFS diagnosis and I experienced the symptoms.
In context ↗ - At worst: Moderate
I considered my experience then moderate. I was still able to do small grocery trips, but I would pay dearly for it.
In context ↗ - Now: Much better
I’ve gone from moderate (mostly housebound, nearly bed bound) to mild. ... I would consider my current state to be still recovering, but in remission.
- Began after: a vaccination
Same, or at least highly suspect a reaction to the covid vaccines. I got 4 of them and progressively got worse until I was essentially housebound and inching towards being bed bound.
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
A Reddit user with a CFS diagnosis suspects a reaction to four covid vaccine doses was behind a progressive decline to housebound and nearly bed bound, averaging 1,400 steps a day in 2022. Treatment for dysautonomia and years of slowly building stamina brought them to mild, but a big gym session in February 2025 triggered a crash. By mid-2025 they were running several times a week and taking three courses, in remission but still recovering.
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What they tried
What they credit
Also tried
Their words about each treatment
- treatment of my dysautonomia · Helped
I was improving with treatment of my dysautonomia
In context ↗ - slowly building up my stamina and running · Helped
It's been years of slowly building up my stamina to get to the point I'm at ... I've started running multiple times a week again
- planning rest around activity · Not said
I had to plan days, maybe a week of rest around any activity.
In context ↗
Approaches: Physiotherapy and rehab
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. 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 |
|---|---|---|
| — | progressive worsening after four covid vaccine doses until essentially housebound and nearing bed boundI got 4 of them and progressively got worse until I was essentially housebound and inching towards being bed bound.In context ↗ | Not stated |
| 2022 | mostly housebound, sleeping 18+ hours a day, on the verge of needing their husband's careI was averaging 1400 steps a day in 2022, but wasn’t able to avoid crashes, but I could plan rest.In context ↗ | Moderate |
| by early 2025 | slowly built up stamina and improved with treatment for their dysautonomiaIt’s been years of slowly building up my stamina to get to the point I’m atIn context ↗ | Mild |
| 2025-02 | energy plummeted about 10 days after a big gym session with a trainer; sleeping 12-14 hours, struggling to feed themselvesafter about 10 days, my energy plummeted and I have been struggling to do even basic things for myselfIn context ↗ | Moderate |
| 2025-06 | improved from moderate (mostly housebound, nearly bed bound) to mild0/9. I’ve gone from moderate (mostly housebound, nearly bed bound) to mild.In context ↗ | Mild |
| 2025-07 | running multiple times a week and taking three college courses, 15-20 km a weekOver the last month, 5800 steps because I’ve started running multiple times a week again.In context ↗ | Mild |
| 2025-08 | envelope slowly improved; still has PEM but rarely triggers itBut undeniably had PEM and I still do, I just don’t manage to trigger it very often these days.In context ↗ | Mild |
Adverse events
- “I got 4 of them and progressively got worse until I was essentially housebound and inching towards being bed bound.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
But undeniably had PEM and I still do, I just don’t manage to trigger it very often these days.
In context ↗ - Brain fog
I almost feel as bad, fatigue and brain fog wise, as I did at my worst before I was getting treatment.
In context ↗ - POTS & dysautonomia
exercises that historically always gave me presyncope. Sure enough, I started blacking out before I finished my first set.
In context ↗ - Sleep problems
Sometimes I’d end up sleeping 18+ hours a day and also need naps after eating.
In context ↗ - Temperature regulation
I feel too cold to continue sitting there, crawl under a heat blanket and fall asleep for the night.
In context ↗
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