Long COVID with dysautonomia and crashes, somewhat better with rehab and lifestyle changes
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3.5 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
my other neurological symptoms that I've had since covid a few years ago
In context ↗ - At worst: Moderate
Before, I wouldn't be able to tolerate much at all and I wouldn't even be able to start challenging myself. ... I am still 75% housebound.
In context ↗ - Now: Somewhat better
I am recovering. Some months I've been practically normal, then if I get a virus I'll relapse. ... I'm still functioning pretty poorly overall like I wouldn't be able to work if it wasn't full time remote
In context ↗ - Began after: COVID
I've had since covid a few years ago
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
Lake 95947 has had long COVID for about 3.5 years, with breathlessness when talking while sitting (now almost resolved), dysautonomia, light sensitivity and crashes after any virus; a crash once meant weeks or months out of action. With supervised neuro and physical rehab, coping work and lifestyle changes they now recover from crashes within days, have done a 45-minute strength session and work full time remotely, but remain about 75% housebound and relapse when they catch a virus.
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What they tried
What they credit
Also tried
Their words about each treatment
- somatic coping mechanisms and scripts · Helped a lot
the biggest impact I've had is just the somatic side. Coping mechanisms.
In context ↗ - neuro rehab team · Helped a lot
The neuro rehab has helped everything for me.
In context ↗ - supervised exercise, ramped up over a year · Helped
I have started exercising again, heavily supervised etc and ramping up over a year and it's helping me a lot too and I'm feeling even better.
In context ↗ - chronic insights app · Helped
I track my symptoms using an app called chronic insights and it's helped me see the pattern of different symptoms coming and going.
In context ↗ - switching phone, monitor and inside lighting · Helped
I've switched my phone and monitor and inside lighting to aggressively contain it for the last few days and it's helped a lot so far.
In context ↗ - covid vax · Worse
I get affected by the covid vax now ... I did try the covid vax while having long covid to find that out.
In context ↗
Approaches: Brain retraining · Physiotherapy and rehab
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2023 | long COVID after a covid infectionI've had since covid a few years agoIn context ↗ | |
| before treatment | could tolerate very little; out of breath talking while sitting; crashes lasted weeks or monthsBefore, I wouldn't be able to tolerate much at all and I wouldn't even be able to start challenging myself.In context ↗ | |
| over the past year | crashes now recover in days; can attend an art class and see friendsI have started exercising again, heavily supervised etc and ramping up over a year and it's helping me a lot tooIn context ↗ | Graded rehab and self-made programmes |
| 2026 | relapse after a mild virusif I get a virus I'll relapseIn context ↗ | |
| 2026-10-24 | neuro rehab helping everything; still 75% housebound and working remotelyThe neuro rehab has helped everything for me.In context ↗ |
Adverse events
- COVID vaccination as treatment“For me I get affected by the covid vax now but can take other vaccines without a flare-up. ... I did try the covid vax while having long covid to find that out.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Instead of a week or two or even months of being out of action it's now a few days.
In context ↗ - POTS & dysautonomia
lots of neuromuscular and dysautonomic issues still
In context ↗ - Light & noise sensitivity
I now know I have sensitivity to flourescent and some LED lights.
In context ↗ - Breathlessness
breathing has almost completely resolved where before I would be out of breath talking sitting down
In context ↗ - Vision problems
my symptoms have changed over time, so I have trouble night driving now but was ok before
In context ↗
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