Long COVID
Severe → relapsedIll 2.5 years before improving or writingNeeds ongoing treatment
Bedridden with long COVID, recovered then relapsed after reinfection; LDN eased pain
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2.5 years
- Last post
- May 2025
In their words
- Condition: Long COVID
I have had long covid twice.
In context ↗ - At worst: Severe
I was bedridden for months at a time.
In context ↗ - Now: Relapsed
I fully recovered the first time but managed to get sick again a mere 3 months later.
In context ↗ - Began after: COVID
I had covid in March of 2020 and started experiencing long haul symptoms a few weeks later.
Read from 102 of their posts and comments; links to the 28 this page draws on
Summary
Petrel 30027 caught COVID-19 in March 2020 and developed long COVID with post-exertional malaise, pain and brain fog, becoming bedridden for months and stopping work. Time and rest brought full recovery after about 2.5 years in September 2022, but reinfection three months later restarted the illness. Low-dose naltrexone from February 2023 eased pain and shortened crashes; by mid-2024 he was improving but still limited and unable to work.
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What they tried
What they credit
Also tried
Therapy / councilor· Helpedmeditation· Helpedjournaling· Helpedsuper consistant sleep wake times and meal times· Helpedtreatment for Bipolar· Helpedmedical marijuana· Helpedcovid vaccine doses· No changeOmega 3s· No changevitamin d· No changeb complex· No changetumeric· No changecordyceps· No changeastralagus root· No changemagnesium at night· No changeschisandra· No changeprobiotic· No changeaspirin· No changediet change· No changeSSRIs / antidepressant medicine· WorseGabapentin· Worseh1 blockers· Worseh2 blockers· Worseperiod of being sedentary· Worsephysical therapy· Not said
Their words about each treatment
- Naltrexone (LDN) · Helped a lot
I have had a huge improvement in my symptoms. Its not magic, I still have a low PEM limit but I recover from PEM faster and with less pain.
In context ↗ - Paceing · Helped a lot
In my experience, I fully recovered using this strategy (it took 2.5 years), only to get reinfected
In context ↗ - Time · Helped a lot
Time and rest. It happened out of the blue.
In context ↗ - Therapy / councilor · Helped
My one peace of advice for recovery for you is to get a councilor. It is the one treatment I paid for that really was worth it.
In context ↗ - meditation · Helped
At times I used the only energy i had to meditate or journal.
In context ↗ - journaling · Helped
journaling helps me and meditation can be good
In context ↗ - super consistant sleep wake times and meal times · Helped
The thing that has been the most helpful imho is a super consistant sleep wake times and meal times
In context ↗ - covid vaccine doses · No change
Over the long term, the vaccine have not moved the needle either way in regards to my long covid.
In context ↗ - treatment for Bipolar · Helped
my treatment for Bipolar also helped with the brain fog in post covid
In context ↗ - SSRIs / antidepressant medicine · Worse
I have had similar experiences with starting a new antidepressant medicine, including suicidal thoughts and restlessness, anxiety , and panic.
In context ↗ - Gabapentin · Worse
I tried Gabapentin but it was giving bad side effects so I was off it quickly.
In context ↗ - Omega 3s · No change
Suppliments didn't really help me much, or at least I didn't notice a physical change. ... Omega 3s, vitamin d, b complex, tumeric, cordyceps, astralagus root, magnesium at night, schisandra, and a probiotic.
In context ↗ - probiotic · No change
I also was taking probiotics that whole time.
In context ↗ - h1 blockers · Worse
I tried h1 and h2 blockers, but didn't feel good on them and they didn't effect my PEM so I stopped them.
In context ↗ - aspirin · No change
I tried aspirin for a bit too but didn't really feel different.
In context ↗ - diet change · No change
I changed my diet completely about a over a year ago. I've stuck to it and was pretty consistant the whole time. While it did help me feel better and live healthier, it didnt change anything for me.
In context ↗ - medical marijuana · Helped
Helps with insomnia with me. And fuzzy pain is better than normal pain for my PEM.
In context ↗ - period of being sedentary · Worse
I tried a period of this (a couple months) the first round and found that I was worse than I started.
In context ↗ - physical therapy · Not said
initially they had me do some physical therapy, but that was early on (years ago) and they've since embraced paceing
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 10 months after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March 2020 | COVID-19, mostly asymptomatic with odd headaches; long haul symptoms began a few weeks laterMarch 2020. Initial infection, mostly asymptomatic beside some weird headaches.In context ↗ | Not stated | |
| January 2021 | possible asymptomatic reinfection worsened PEM until he could not workJanuary 2021. Possible reinfection. Asymptomatic. Worsened PEM to the point I could not work.In context ↗ | Severe | |
| 2021-2022 | bedridden for months at a time; gave up his job to restI was bedridden for months at a time.In context ↗ | Severe | |
| June 2022 | chest pain improved on its own; other symptoms persistedI noticed 3 months ago that my chest pain had significantly improved. I didn't change anything it just happened.In context ↗ | Moderate | Time and spontaneous remission |
| August 2022 | PEM lifted; walks reached a mile and he rode his bike againA month ago I started noticing my PEM lift. ... After a week I hit the mile mark in my walks.In context ↗ | Mild | Pacing and the energy envelope |
| September 2022 | full recovery; back to normal life with five-mile bike ridesI was back to my normal life with no symptoms. I was free.In context ↗ | Recovered | Time and spontaneous remission |
| December 2022 | COVID reinfection; long haul symptoms returned three weeks laterIt restart the long covid, but it was a milder kind. I was able to do a fair bit.In context ↗ | Moderate | |
| February 2023 | started naltrexone; able to do much moreFeburary 2023 Naltelrexone. Able to do much more.In context ↗ | Moderate | Low-dose naltrexone |
| July 2023 | 80% back, short bike rides, still crashing and insomniaI'd say I'm 80% back, but still get PEM symtoms after overdoing it.In context ↗ | Mild | Low-dose naltrexone |
| September 2023 | about 95% better; 30 minutes of brisk cycling and no PEM for two monthsAt 9 months I've been able to do 30 minutes of relativly fast riding and getting my heart rate up. I have not had a PEM symptoms in 2 months.In context ↗ | Near normal | Low-dose naltrexone |
| September 2023 | probable asymptomatic reinfection; bedbound for a few monthsI have been bed bound for a few months last year, caused by a probable asymptomatic reinfection.In context ↗ | Severe | |
| November 2023 | big relapse over the holidaysIts been better with LDN, but in a big relapse for the holiday currently so its up and down.In context ↗ | Moderate | |
| June 2024 | slow progress after nine months; four-block walks with a restI can take a short (4 blocks) walk with a long rest in between. PEM comes if I do anything more than that.In context ↗ | Moderate | Pacing and the energy envelope |
| May 2025 | feeling better but not fully recovered; masking and pacing2 and a half years later I am feeling better but havent fully recovered yet.In context ↗ | Moderate | Low-dose naltrexone |
Adverse events
- Gabapentin (Neurontin)“I tried Gabapentin but it was giving bad side effects so I was off it quickly.” In context ↗ Side effects
- H1 antihistamines (unspecified)“I tried h1 and h2 blockers, but didn't feel good on them and they didn't effect my PEM so I stopped them.” In context ↗ Side effects
- H2 blockers (unspecified)“I tried h1 and h2 blockers, but didn't feel good on them and they didn't effect my PEM so I stopped them.” In context ↗ Side effects
- COVID vaccination as treatment“I had bad reactions to all three of my doses too. My PEM presented as pain 12-48 hours later, especially in my limbs.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“Each time i got a dose was followed by a flare up of symptoms for a few weeks, but eventually a return to baseline.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I have had varying reactions to each dose, from actually feeling better for a few days, to 2 months of worse symtoms.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“I have had similar experiences with starting a new antidepressant medicine, including suicidal thoughts and restlessness, anxiety , and panic.” In context ↗ Suicidal thoughts or attempt
- Cannabis (THC, marijuana)“I hate feeling like an unmotivated zombie so I've quit for the time being.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
My main symptom was the Post Exertional Malaise and the associated muscle and joint aches always occuring a day after almost any activity.
In context ↗ - Brain fog
I have severe brain fog that makes it impossible for me to concentrate.
In context ↗ - Pain & fibromyalgia
The pain can be overwhelming when I overdo it, like can't sleep its so bad.
In context ↗ - Sleep problems
Only big issue I am dealing with is insomnia.
In context ↗ - Gut problems
I still have some GI symptoms
In context ↗ - Heart symptoms & palpitations
I noticed 3 months ago that my chest pain had significantly improved.
In context ↗ - Neuropathy & tingling
My numbness usually occurs because of my Post Exertional Malaise.
In context ↗ - Headaches & migraine
I still feel like I have the flu and have headaches but its managable.
In context ↗ - Anxiety & low mood
I struggle with depression and managing that with covid long haul was a huge effort.
In context ↗ - Muscle weakness
I can exersise again, although I really notice how weak I am.
In context ↗
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