Long COVID with tinnitus, memory loss and pain, somewhat better with rest and pacing
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Jul 2026
In their words
- Condition: Long COVID
ever since learning that I have long covid I've been following all the right protocols and I've gotten so much better
In context ↗ - At worst: Severe
extreme fatigue, the kind that makes you feel like gravity itself is dragging you down and it's hard to move and you're forced into bed for large parts of the day
In context ↗ - Now: Somewhat better
since my energy has been a bit better the last few months
In context ↗ - Began after: nothing they could name
Mine were very gradual as well. Started with worse sleep, a twitch in my eyelid, and a recurrent stumbling on one leg
Read from 20 of their posts and comments; links to the 14 this page draws on
Summary
Developed long COVID gradually from around 2022, with tinnitus, memory and reading problems, gut issues, pain and suspected POTS; by early 2024 tinnitus and memory loss forced them to stop working. From mid-2024 they improved by resting, pacing, an inclined bed and supplements, crediting time first. A crash after reading in January 2025, worsened by exercise, and old symptoms returning after VR ping pong in July 2026 interrupted gains, but by July 2026 their energy was a little better.
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What they tried
What they credit
Also tried
Their words about each treatment
- exercising · Worse
A few hours after this bright idea I started getting the usual issues, biggest pain being random memory loss
In context ↗ - raising the front of the bed by 6" (15cm) · Helped
raising the front of the bed by 6" (15cm) completely fixed those problems almost overnight
In context ↗ - rest when needed · Helped
I've been going to bed the moment I start feeling any of my symptoms worsen
In context ↗ - supplements · Helped
I've been taking some supplements
In context ↗ - booster · No change
got a booster a few months ago and things have been pretty much the same
In context ↗ - habituating / accepting the tinnitus · Helped
The last few weeks I tried habituating and I am not as bothered by it
In context ↗ - very restrictive diet · Not said
I've been on a very restrictive diet for a month
In context ↗ - a meal a day · Not said
I started eating once every 24 hours
In context ↗ - no caffeine or stimulants · Not said
No caffeine or stimulants of any kind.
In context ↗ - breathing exercises · Helped
I was trying to make it climb down with some breathing exercises, because I saw it work to some extent yesterday
In context ↗ - beta blocker · Not said
I'm on a beta blocker
In context ↗ - low dose mirtazapine · Not said
I'm even on low dose mirtazapine for sleep
In context ↗ - time · Helped a lot
Time first and foremost, rest when needed, whatever supplement works for you.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | gradual onset over years: worse sleep, eyelid twitch, stumbling on one legStarted with worse sleep, a twitch in my eyelid, and a recurrent stumbling on one legIn context ↗ | Mild | |
| August 2023 | worsened greatlywhen I worsened greatly in August I started getting more and more of themIn context ↗ | Moderate | |
| early 2024 | tinnitus and memory loss forced them to stop workingIt came to the point where the tinnitus and the memory loss were unbearable and forced me to stop workingIn context ↗ | Severe | |
| October 2024 | following protocols, resting when symptoms worsened, supplementsI've been going to bed the moment I start feeling any of my symptoms worsen ... I've gotten so much betterIn context ↗ | Moderate | Pacing and the energy envelope |
| January 2025 | crashed after reading a complex text, then exercisingJust had a crash after months of steady recovery just as I was starting to get back to workIn context ↗ | Moderate | |
| February 2025 | massive progress over six months, though overdid itI've made massive progress the last 6 monthsIn context ↗ | Moderate | |
| July 2026 | energy a little better; old symptoms returned after VR ping pongsince my energy has been a bit better the last few monthsIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I'm monitoring my heart rate so it doesn't go too high and trigger PEM symptoms
In context ↗ - Brain fog
I have the hardest time reading
In context ↗ - POTS & dysautonomia
every time I stand longer than 5 minutes my heart rate is routinely in the 140s+
In context ↗ - Sleep problems
averaging 4 hours a night
In context ↗ - Pain & fibromyalgia
strange pain in very specific locations in between my ribs, all over my chest
In context ↗ - Headaches & migraine
about 95% of the pressure I had in my head was gone
In context ↗ - Gut problems
POTS, CFS, gut issues
In context ↗ - Tinnitus
debilitating tinnitus
In context ↗ - Vision problems
vision problems
In context ↗ - Muscle weakness
the kind that makes you feel like gravity itself is dragging you down and it's hard to move
In context ↗ - Heart symptoms & palpitations
my resting heart rate has been 95-105 all day when it's usually 75-85
In context ↗ - Anxiety & low mood
made me consider euthanasia
In context ↗
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