Long COVID
Severe → relapsedIll 5 years before improving or writingNeeds ongoing treatment
Bedbound with long COVID, improved with radical rest, then relapsed
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
I have long covid with me/cfs symptoms and PEM.
In context ↗ - At worst: Severe
I crashed completely and became bed bound at 2022.
In context ↗ - Now: Relapsed
I've went from bedbound to one day being able to do chores again and now I'm back to 50-50 bedbound and housebound.
In context ↗ - Began after: COVID
I've been suffering from PEM, brain fog and chronic fatigue since I got COVID in 2020.
In context ↗
Read from 88 of their posts and comments; links to the 29 this page draws on
Summary
Island 27424 developed long COVID in 2020 and was bedbound for about six months in 2022. She credited radical rest and therapy rather than supplements, and improved slowly: by 2024 she worked a full 9-5 day and could walk and cycle again. Low-dose naltrexone later eased her crash pain. From April 2026 she worsened again, and by late 2026 was mostly bedbound and housebound.
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What they tried
What they credit
Also tried
singing classes· Helpedmelatonin· HelpedLSD microdose· Helpedtemazepam· Helpedmorning light viewing· Helpedpacing· HelpedGarmin Vivoactive 5· Helpedfixed sleep schedule (sleep hygiene)· Helpedrehabilitation clinic programme· HelpedLDN· Helpedinhaler· No changemultivitamins, iron pills and vit D· No changeomega 13· No changeweight training with a personal trainer· Worsecryo chambers· Worsesaunas· Worsemeditation/body scan· Not said
Their words about each treatment
- inhaler · No change
I had an inhaler in the very beginning but it did very little
In context ↗ - weight training with a personal trainer · Worse
I tried to do the gym/healthy life trick. It made everything WORSE.
In context ↗ - singing classes · Helped
I had vocal fatigue and despite everything took singinf classes. It definitely helped me with my breathwork and it disappeared in a month or so.
In context ↗ - melatonin · Helped
I found that melatonin has helped me sleep but the quality isn’t as good as a normal deep sleep.
In context ↗ - LSD microdose · Helped
He gave me a microdosage of LSD to see if it would help me with my energy and focus. ... I felt sharper and more focused than I had in months.
In context ↗ - temazepam · Helped
My doc gave me temazepan for sleeping pills. Only downside is that these mild sleep meds don't help during high states of anxiety. Otherwise seem fine.
In context ↗ - cryo chambers · Worse
I went to cryo chambers for cold exposure. ... It only drained me more.
In context ↗ - saunas · Worse
I did saunas to test heat exposure. ... It only drained me more.
In context ↗ - morning light viewing · Helped
Getting light in the first hour of waking up helps with rhythm.
In context ↗ - pacing · Helped
Pacing helps me to make time for relax time and not overdo it. It doesn't cure me or makes me overall progress to a healthier life.
In context ↗ - radical rest · Helped a lot
Aggressive resting has helped me more than any supplement ever. ... I recovered naturally to housebound due to extreme resting and taking it slow and not working.
- psychotherapy (mind-body and trauma therapy, ACT) · Helped
I've had two years of intensive professional therapy and I've noticed how much better I feel mentally. ... has helped but has not CURED my long covid me/cfs symptoms.
In context ↗ - meditation/body scan · Not said
I'll sometimes lay down for 30 minutes with an alarm to rest my body and do a meditation/body scan to relax.
In context ↗ - Garmin Vivoactive 5 · Helped
It's helping me to pace by keeping my heart rate low while I do things
In context ↗ - fixed sleep schedule (sleep hygiene) · Helped
Unironically I do follow the advice that's given by your ME/CFS team because it helps me a lot.
In context ↗ - rehabilitation clinic programme · Helped
I went to this rehabilitation clinic and it has been very effective to make my life more sustainable and a better insight on my energy levels.
In context ↗ - LDN · Helped
For me LDN really helped me 1) fall asleep faster and 2) make sleep more restorative 3) Lessens the pain and discomfort of a crash.
In context ↗ - multivitamins, iron pills and vit D · No change
I don't believe in taking supplements and wild diets, it has done nothing for me but waste money
In context ↗
Approaches: CBT & mindset · Radical rest
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2020 | COVID-19 infection, long COVID began while working full timeI've been suffering from PEM, brain fog and chronic fatigue since I got COVID in 2020.In context ↗ | Mild | |
| February 2022 | cut work from 40 hours to 30, then to 6 a weekI went from 40h full time to 30 and now to 6 because LC just destroyed my focus and ability to think without draining my batter by a million.In context ↗ | Moderate | |
| 2022 | crashed completely and became bedboundI crashed completely and became bed bound at 2022.In context ↗ | Severe | |
| March 2023 | could do several household tasks without needing days of restNowadays I can do multiple tasks and still feel good without needing days of rest.In context ↗ | Moderate | Radical rest |
| July 2023 | managing household chores again, work still off the tableI have improved over time to the point I can manage my household chores again but work is still off the table.In context ↗ | Moderate | Radical rest |
| unknown date | crashed for months after overexerting on a 7-day trip with a friendThe moment I hugged her goodbye at the airport I crashed so hard I felt it for months after.In context ↗ | Severe | |
| May 2024 | worked a full 9-5 day plus a 3-hour morningAlmost four years later (crazy) I finally worked a full day 9-5!In context ↗ | Mild | Radical rest |
| February 2025 | long walks, 10 minutes of cycling and hobbies; brain fog gone2025 I'm able to take long walks, cycle for 10 minutes and my hobbies.In context ↗ | Mild | Radical rest |
| April 2026 | started worsening; spending most of the day lying downI've worsened since April and I've announced to my loved ones that this seem to be a permanent change in phase.In context ↗ | Severe | |
| October 2026 | half bedbound, half housebound, on disabilityI've went from bedbound to one day being able to do chores again and now I'm back to 50-50 bedbound and housebound.In context ↗ | Moderate |
Adverse events
- Cryotherapy and cold exposure“I went to cryo chambers for cold exposure. I did saunas to test heat exposure. For my exhaustion, brain fogged brain it didn’t do much positive. It only drained me more.” In context ↗ Made symptoms worse
- Hyperthermia and sauna“I went to cryo chambers for cold exposure. I did saunas to test heat exposure. For my exhaustion, brain fogged brain it didn’t do much positive. It only drained me more.” In context ↗ Made symptoms worse
- Melatonin“I try irregularly use melatonin because I found the more I use it the more I need to take.” In context ↗ Other
- CBT and psychotherapy“both programmes wrecked my energy even if they helped me feel better long term” In context ↗ Made symptoms worse
- Low-dose naltrexone“I made the mistake to accidentally take x10 the meant dose with my pipet (my failed math classes forever haunting me) and I felt a bit dizzy like I was tipsy and got some vivid dreams” In context ↗ Side effects
- Low-dose naltrexone“I once took one at night and during the day as an experiment and I was incredibly nauseous.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I've been suffering from PEM, brain fog and chronic fatigue since I got COVID in 2020.
In context ↗ - Brain fog
My brainfog disappeared and I am mostly struggling with PEM and recharging my energy.
In context ↗ - Sleep problems
Vicious cycle of insomnia (started with just LC and now im in a cycle of taking melatonin.
In context ↗ - Anxiety & low mood
More anxiety ... More depression
In context ↗ - Headaches & migraine
PEM is often a migraine, headache, flu like symptoms or heavy exhaustion.
In context ↗ - Light & noise sensitivity
I'm particularly sensitive to sound so I tend to read a lot or play games with soothing music
In context ↗ - Heart symptoms & palpitations
Sometimes it’s fine, sometimes I get mentally disconnected, weird racing heartbeat
In context ↗ - Pain & fibromyalgia
I'm using LDN which has helped me get rid of pain symptoms but does not recover energy.
In context ↗ - Temperature regulation
Heat can fuck me up but if it stays around 20-25C it actually feels really good
In context ↗
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