Long COVID with crashes and fatigue, now somewhat better despite further infections
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Aug 2023
In their words
- Condition: Long COVID
LC since October 2020 .
In context ↗ - At worst: Moderate
Talking is the worst , stairs are a no no .
In context ↗ - Began after: COVID
First time Oct 2020.
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Island 90821 has had long COVID since a first COVID-19 infection in October 2020, and nearly three years later still paced and rested to manage crashes. They were about 70% recovered by December 2022, but further infections each pulled their recovery back. Memory and reading had improved greatly, while fatigue, breath hunger, palpitations, tinnitus, brain fog and a reduced sense of smell remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- diary · Not said
Have been keeping a diary for the last 12 months - I found a pattern based on what I do .
In context ↗ - exercise · Worse
I have not been back in a gym since I stupidly tried to excerise my way out in Nov 2020.
In context ↗ - Keto · Not said
My diet is Keto.
In context ↗ - supplements · Not said
My supplements are endless .
In context ↗ - stop, rest, pace · Helped
Stop, rest , pace is my life.
In context ↗
Approaches: Pacing
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 2.2 years after onset: the story doesn’t say how ill they were before that. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| October 2020 | First COVID-19 infection; long COVID followedFirst time Oct 2020.In context ↗ | Not stated |
| November 2020 | Tried to exercise their way out of it; never went back to a gymI have not been back in a gym since I stupidly tried to excerise my way out in Nov 2020.In context ↗ | Not stated |
| December 2022 | About 70% recoveredLC 2020. 70 % recoveredIn context ↗ | Mild |
| 2023-04-10 | Day 1 of a crashCurrently day 1 of crash .In context ↗ | Not stated |
| 2023-05-21 | Bed bound for two days after two and a half good daysHad 2 and half really good days . Now bed bound for 2 days , improving on second half of 2nd day.In context ↗ | Severe |
| 2023-08-11 | Memory much improved and able to read a lot; still pacing with symptoms and crashesMy memory has definitely improved hugely from my baseline . I can read a lot .In context ↗ | Moderate |
Adverse events
- Everyday exercise and activity“I have not been back in a gym since I stupidly tried to excerise my way out in Nov 2020.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Had 2 and half really good days . Now bed bound for 2 days
In context ↗ - Brain fog
breath hunger and brain fog are the worst
In context ↗ - Loss of smell or taste
sense of smell still diminished
In context ↗ - Tinnitus
constant tinnitus
In context ↗ - Heart symptoms & palpitations
palpitations when I over do it
In context ↗ - Anxiety & low mood
the depth of anxiety, depression and dark thoughts
In context ↗
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