Long COVID with weeks mostly in bed, now nearly back to normal with paced movement
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 8 months
- Last post
- Sep 2024
In their words
- Condition: Long COVID
my doctor is 100% sure that I’m a long hauler (I recovered then got worse)
In context ↗ - At worst: Severe
My anxiety was off the charts and I was mostly stuck in bed.
In context ↗ - Now: Near normal
I’m mostly recovered
In context ↗ - Began after: COVID
was infected for the first time (and only other time) December 2022
In context ↗
Read from 23 of their posts and comments; links to the 14 this page draws on
Summary
A 26-year-old in Australia developed long COVID after a first COVID infection in December 2022, recovering then worsening with tachycardia, breathlessness and weeks mostly stuck in bed. She improved from about six months on and found paced gentle movement and an exercise physiologist helpful, was mostly recovered by 2024 and doing pilates and weightlifting. A December 2023 reinfection, treated with Paxlovid, caused no setback.
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What they tried
What they credit
Also tried
Their words about each treatment
- antibiotics · Not said
prescribed me antibiotics
In context ↗ - beta blocker (metoprolol) · Helped
I’ve been prescribed a beta blocker (metoprolol) which I’ve been taking as needed. ... My resting before covid was 65 and after covid but pre-beta blocker was over 100.
- diazepam (Valium) · Helped
only thing that has helped these episodes is diazepam ... I’ve been prescribed Valium for 5 years and have used them as occasional rescue meds
- mirtazapine · Helped
I take mirtazapine (15mg) ... mirt really helps my insomnia and always has
In context ↗ - probiotic · Helped
have been using a probiotic and digestive enzymes which have really helped
In context ↗ - Paxlovid · Helped a lot
I can attest to Paxlovid being fantastic - it knocked most of my symptoms out within a day or two.
In context ↗ - exercise physiologist · Helped
I started working with an exercise physiologist who specializes in POTS and CFS/ME.
In context ↗ - gentle movement (paced) · Helped
I started doing at-home pilates again about 8 months after my infection ... getting back into gentle movement (paced!) probably helped the most with that
- weightlifting · Not said
I waited about 8 weeks after reinfection and then started weightlifting 2-3x a week
In context ↗
Approaches: Pacing · Physiotherapy and rehab
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 |
|---|---|---|
| December 2022 | First COVID-19 infection, moderate and lasting 10 dayswas infected for the first time (and only other time) December 2022In context ↗ | Moderate |
| early 2023 (about 5 weeks in) | Tachycardia, breathlessness, adrenaline dumps; anxiety off the charts, mostly stuck in bedMy anxiety was off the charts and I was mostly stuck in bed.In context ↗ | Severe |
| August 2023 | Started really recoveringstarted really recovering around August 23In context ↗ | Mild |
| November 2023 | Much better but not 100%, started a new jobI’m doing much, much better now (although not 100%) and even started a new job last week.In context ↗ | Mild |
| February 2024 | Dysautonomia almost completely gone, only small flare upsMine is almost completely gone with some small flare ups here and there.In context ↗ | Near normal |
| June 2024 | Mostly recovered; back to pilates and weightlifting 2-3x a week with occasional POTS flaresI’m mostly recoveredIn context ↗ | Near normal |
Adverse events
- Paxlovid / nirmatrelvir“Weird taste in my mouth was only after the first dose.” In context ↗ Side effects
- Everyday exercise and activity“I have POTS so there’s some exercises that flare it a bit” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
I have POTS so there’s some exercises that flare it a bit
In context ↗ - Heart symptoms & palpitations
My resting before covid was 65 and after covid but pre-beta blocker was over 100.
In context ↗ - Post-exertional malaise
I did have PEM but it resolved a while ago
In context ↗ - Anxiety & low mood
My anxiety was off the charts and I was mostly stuck in bed.
In context ↗ - Sleep problems
mirt really helps my insomnia and always has
In context ↗ - Gut problems
I definitely have ongoing gut health issues ... I’m nauseous on and off
- Breathlessness
my coughing/shortness of breath isn’t any better
In context ↗
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