Mostly in bed with long COVID and unable to work, much better with time and rest
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4.5 years
- Last post
- Mar 2026
In their words
- Condition: Long COVID
We've been dealt a tough hand with LC, that's for sure.
In context ↗ - At worst: Severe
I wouldn't say severe, but mostly in bed. I'd force myself outside for 30 mins a day most days. But I wasn't working at all, couldn't watch tv, let alone read a book.
In context ↗ - Now: Much better
I'm somewhat better. Let's say 75%-80%.
In context ↗ - Began after: COVID
Infected early on in pandemic.
In context ↗
Read from 30 of their posts and comments; links to the 19 this page draws on
Summary
Sparrow 61418 caught COVID at the start of the pandemic in 2020 and spent 2021-22 mostly in bed, unable to work, watch TV or read. Improvement came slowly with time and rest, reaching 60-80% of normal by 2025, with work, occasional exercise and periods of near remission around 80%. Neck and joint pain, noise and light sensitivity and MCAS-type reactions linger. A small transplant procedure caused a rough but temporary worsening.
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What they tried
What they credit
Also tried
Their words about each treatment
- physio neck exercises · Helped
I do some physio type exercises, which seem to help some.
In context ↗ - vitamin D supplement · Not said
My vit d will run low unless I supplement now.
In context ↗ - Rest · Helped
What did I do? Rest, time, etc.
In context ↗ - Time · Helped
I'm somewhat better now, thanks to time, most likely.
In context ↗ - earplugs and sunglasses · Helped
try things like earplugs, sunglasses to minimise glare, etc. I did these for a while and felt they helped
In context ↗ - fasting · Worse
Personally, I felt even worse after 24 hours. And worse again with longer periods.
In context ↗ - nicotine · Helped
Same for me, nicotine helps significantly. Not a cure, sadly!
In context ↗ - ssris · Not said
I had a brief period on ssris, a common side effect is they dilate the pupils.
In context ↗ - hair transplant · Worse
I had a relatively small transplant procedure and found the aftermath quite rough, particularly the 24/48 hours afterwards.
In context ↗ - antibiotics · Worse
I think my body didn't take kindly to antibiotics, local anaesthetic, etc.
In context ↗ - minoxidil · Much worse
Post infection I could no longer tolerate - it triggered a worsening of symptoms (joint pain, fatigue particularly) more severely than anything else.
In context ↗ - Other surgery (adrenal, lung, venoplasty) · Worse
It was temporary worsening of my already existing symptoms. In particular for me, I found anxiety/fatigue really went out of whack, plus overall unwell/sick feeling.
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 |
|---|---|---|---|
| early 2020 | infected with COVID at the start of the pandemic; still working long hoursInfected early on in pandemic.In context ↗ | Mild | |
| 2021-2022 | mostly in bed, unable to work, watch TV or readI was pretty bad throughout 2021 into 22. I wouldn't say severe, but mostly in bed. I'd force myself outside for 30 mins a day most days.In context ↗ | Severe | |
| about September 2024 | hit a plateau of better functioning at roughly 75-80%I hit a certain point of functioning perhaps six months ago that has maintained but not progressed.In context ↗ | Mild | Time and spontaneous remission |
| July 2025 | working, exercising within limits, with periods of near remissionNow, I probably hover around 60-80%.In context ↗ | Mild |
Adverse events
- Intermittent fasting“Personally, I felt even worse after 24 hours. And worse again with longer periods.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“I had a brief period on ssris, a common side effect is they dilate the pupils. However, only one dilated with me.” In context ↗ Side effects
- Other surgery (adrenal, lung, venoplasty)“It was temporary worsening of my already existing symptoms. In particular for me, I found anxiety/fatigue really went out of whack, plus overall unwell/sick feeling.” In context ↗ Made symptoms worse
- Antibiotics (unspecified)“I think my body didn't take kindly to antibiotics, local anaesthetic, etc.” In context ↗ Side effects
- Minoxidil (Rogaine)“Post infection I could no longer tolerate - it triggered a worsening of symptoms (joint pain, fatigue particularly) more severely than anything else. Like, really bad.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
I had/have severe neck pain.
In context ↗ - Light & noise sensitivity
particularly bad noise intolerance too with hyper-vigilance
In context ↗ - Brain fog
I notice I can do things like focus on conversation more easily, which I used to find quite difficult.
In context ↗ - Post-exertional malaise
If I push it at work I can feel the effects the next day.
In context ↗ - POTS & dysautonomia
Less extreme blood pooling, too, as well as joint pain
In context ↗ - Mast cell (MCAS) & allergies
I have mecfs/ also have mcas type reactions.
In context ↗ - Sleep problems
Weird 30 minute fitful sleeps to reset, and wake up feeling terrible.
In context ↗ - Anxiety & low mood
there's now lingering 'PTSD-lite'
In context ↗
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