Long COVID with brain fog and nearly bedbound, now somewhat better after colonoscopy
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5.5 years
- Last post
- Jul 2025
In their words
- Condition: Long COVID
I had the "original flavor" of COVID from March 2020.
In context ↗ - At worst: Severe
Then I got "COVID: the sequel!" and there are times where I was nearly bed-bound.
In context ↗ - Now: Somewhat better
I'm still very de-conditioned. I still need naps. But I laugh harder & louder. My vocabulary is back.
In context ↗ - Began after: COVID
I had the "original flavor" of COVID from March 2020.
In context ↗
Read from 16 of their posts and comments; links to the 9 this page draws on
Summary
They caught COVID in March 2020 and kept working a little over a year before brain fog forced them to stop. After spine surgery they recovered and were job hunting; later a cold reduced their energy, and a COVID reinfection left them nearly bedbound. Weeks after a colonoscopy in early 2025 their fog cleared and they had more energy, though they remained de-conditioned and needed naps. They wonder whether anaesthesia reset their nervous system.
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What they tried
What they credit
Also tried
Their words about each treatment
- supplements · No change
spend a whole lot of money I don't have on supplements that did nothing.
In context ↗ - spine surgery · Helped a lot
Then I had spine surgery for an old injury. ... I made a miraculous recovery, and within a few months I was searching for jobs.
In context ↗ - colonoscopy · Helped a lot
I had a colonoscopy a few weeks ago, and I'm again feeling like the fog suddenly cleared. I have more energy.
In context ↗ - COVID vaccination · Helped
I improved after I was vaccinated ... Then I felt great & hopeful for about a week.
In context ↗ - fitness watch · Helped
my fitness watch was soooo helpful in giving them documentation
In context ↗ - propranolol · Helped
I'm also on propranolol (helps so much with dysautonomia & pots!)
In context ↗ - Zyrtec and Allegra · Not said
I'm on zyrtec in the morning and Allegra at night.
In context ↗ - Pepcid (famotidine) · Not said
I also take 20 mg fomotidine (aka Pepcid) at night.
In context ↗ - armodafinil · Helped
I take Armodafinil every morning so i don't sleep all day.
In context ↗ - Gabapentin · Helped a lot
Gapapentin has been a miracle drug for my neuropathic pain!
In context ↗ - B12 (methylcobalamin) · Helped
I take B12 (methylcobalamin form from costco) which seems to have helped my rashes?
In context ↗ - very low carb diet · Helped
I'm finding that very low carb and intermittent fasting improves my energy.
In context ↗ - a dementia drug · Much worse
Oh, the drug made me psychotic! Paranoid & hallucinating. It was 4 days before I realized I needed to stop it.
In context ↗ - dark chocolate with coconut oil · Not said
I don't know if it helps my physiology, but it's something enjoyable I look forward to each day
In context ↗
Approaches: Surgery & structural
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. 5 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March 2020 | COVID-19; kept working a little over a yearI had the "original flavor" of COVID from March 2020. I managed to continue working a little over a yearIn context ↗ | Mild | |
| June 2021 | too debilitated to keep working; lost in brain fogbut by June 2021 it was just too debilitating and my cognitive abilities... I was lost in the fog more than I wasn'tIn context ↗ | Moderate | |
| — | spine surgery for an old injury; miraculous recovery, searching for jobsI made a miraculous recovery, and within a few months I was searching for jobs.In context ↗ | Near normal | Other surgery (adrenal, lung, venoplasty) |
| — | breakup after a seven-year relationship; barely out of bedI could barely get out of bed for.... a long time.In context ↗ | Severe | |
| — | began recovering physically again after the breakupAnd I started recovering physically, too.In context ↗ | Mild | |
| — | caught a cold; began losing energyI got a cold. I started losing my energy, but it was tolerable.In context ↗ | Mild | |
| — | COVID reinfection; nearly bedboundthere are times where I was nearly bed-boundIn context ↗ | Severe | |
| February 2025 | colonoscopy under anaesthesia; fog cleared and more energyI had a colonoscopy a few weeks ago, and I'm again feeling like the fog suddenly cleared.In context ↗ | Moderate | |
| July 2025 | still de-conditioned, needs naps, nerve pain and dysautonomia persistI'm still very de-conditioned. I still need naps.In context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“I had a 102 fever for a day while my body turned into an antibody factory.” In context ↗ Side effects
- COVID vaccination as treatment“Then I felt great & hopeful for about a week. Then I crashed.” In context ↗ Made symptoms worse
- “Oh, the drug made me psychotic! Paranoid & hallucinating. It was 4 days before I realized I needed to stop it.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
I was lost in the fog more than I wasn't.
In context ↗ - Post-exertional malaise
fear I will trigger PEM with avengeance
In context ↗ - POTS & dysautonomia
They could see how the POTS was affecting my heart rate
In context ↗ - Sleep problems
I still need naps.
In context ↗ - Neuropathy & tingling
Gabapentin has helped SIGNIFICANTLY but not made the symptoms go away completely.
In context ↗ - Muscle weakness
I did have odd reflexes earlier on and one foot was weaker than the other.
In context ↗ - Loss of smell or taste
Sometimes I smell cigarettes (and noone herec smokes - not even neighbors).
In context ↗ - Temperature regulation
Not sweating is the WORST!
In context ↗
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