Bedbound with long COVID, now much better with rest and time
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Aug 2026
In their words
- Condition: Long COVID
i've been suffering from LC for 2.9 years now
In context ↗ - At worst: Severe
In November, i became bed bound, and quit my job, spent few months in a darkroom, suffering deeply in a nightmarish existence
In context ↗ - Now: Much better
5 years into LC. I'm 75 to 80% recovered. ... If i overdo it, i still get symptoms but they're much more manageable and doesn't last long.
In context ↗ - Began after: COVID
I got the covid in 2021
In context ↗
Read from 56 of their posts and comments; links to the 23 this page draws on
Summary
Island 39021 developed long COVID in 2021 after a COVID infection. For almost four years he had constant severe chest pain and breathlessness, plus later severe headaches, relentless fatigue and crashes; he became bedbound in late 2023. He credits rest and time for gradual improvement from the fourth year; by early 2026 he was 75–80% recovered, though overexertion still caused short crashes. An ER antipsychotic caused akathisia.
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What they tried
What they credit
Also tried
Their words about each treatment
- radical rest · Helped a lot
Only thing that helped me get out of that tortue chamber was a radical rest.
In context ↗ - time · Helped a lot
I didn't have any treatment, time was the main thing that fixed this issue.
In context ↗ - daily short walks · Not said
I did short walks whenever i could and ate healthy foods
In context ↗ - healthy eating · Not said
ate healthy foods and didn't take any medication for it
In context ↗ - quit drinking and smoking · Not said
I also quit drinking and smoking and been eating as healthy as i can.
In context ↗ - Benadryl · Worse
i've allergic reaction with Benadryl before. It also caused me some pretty bad restless leg syndrome before.
In context ↗ - antipsychotic (droperidol) · Much worse
I've experienced Akathisia at ER about ten days ago as adverse reaction to an antipsychotic.
In context ↗ - Ativan · Helped
a medicine called Ativan helped me once ... in 10 minutes or so, finally the hellish agony began to subside
In context ↗ - propranolol · Helped
When i experienced it, propranolol helped a lot.
In context ↗ - rapamycin · Not said
I took it yesterday, and made me feel quite good, however today, I'm having a terrible back pain and body discomfort.
In context ↗
Approaches: 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2021 | COVID-19 infection followed by long COVIDI got the covid in 2021In context ↗ | Mild | |
| July/August 2021 | chest pain and breathlessness almost goneMy chest pain and sob is almost gone now.In context ↗ | Mild | Time and spontaneous remission |
| September 2021 | flare after 14-hour flight and rushing through airportstook a 14 hours flight to visit my home country and had to walk fast few times at airportsIn context ↗ | Moderate | |
| about a year into LC | three months off work, almost recoveredafter a year into LC, i took 3 months off from my work and i almost recovered from these problems. I was like 90% improvedIn context ↗ | Near normal | |
| after returning to work | symptoms returned after returning to work, with fatigue, headache and heart issuesstarted working again and these issues came back, plus other issues like extreme fatigue, headache and heart issues.In context ↗ | Moderate | |
| late 2022 | worse after gym and volleyballI was going to gym and playing volleyball and then, suddenly started to feel worse lately.In context ↗ | Mild | |
| November 2023 | bedbound after pushing through symptoms; quit job and spent months in a dark roomI became bed bound, and quit my job, spent few months in a darkroomIn context ↗ | Severe | |
| June 2024 | slow improvement; chest pain and breathlessness mainly gone, extreme fatigue gonesince then things have been improving slowly. The hellish chest pain and shortness of breath is mainly gone.In context ↗ | Moderate | Time and spontaneous remission |
| August 2024 | significant improvement after nearly four yearsIn total, it took me nearly 4 years, to get a significant improvement.In context ↗ | Mild | Time and spontaneous remission |
| September 2024 | crash after overdoing physically and mentally in summerMy current crash started in September, back in the hell.In context ↗ | Moderate | |
| February 2025 | better overall, but crashes if overdoing itI'm better now. However, i still have some issues. If i overdo it, i crash. But overall, better.In context ↗ | Mild | Time and spontaneous remission |
| April 2025 | crash after shopping trip with familyI'm scared and hopeless that i'm heading into another hellish crash again. I was doing relatively better for the past few months.In context ↗ | Moderate | |
| December 2025 | drastic improvement in breathlessness from the fourth year, mostly goneStarting from the 4th year, to my surprise, i started to experience drastic improvement on the shortness of breath bit by bit and as of now, it's mostly gone!In context ↗ | Mild | Time and spontaneous remission |
| February 2026 | 75 to 80% recovered; symptoms manageable if overdoing itI'm 75 to 80% recovered.In context ↗ | Mild | Time and spontaneous remission |
Adverse events
- Diphenhydramine (Benadryl)“a medicine called Ativan helped me once when i had a terrible restless leg syndrome that was caused by Benadryl in the past” In context ↗ Side effects
- “they administered me droperidol, an antipychotic drug same as compazine and reglan via iv bag and within few minutes, i was hit by this indescribable uncomfortable inner body feeling” In context ↗ Mood or psychiatric effects
- “i just surrendered all my will to fight and really wanted to be dead just so that the torture would end” In context ↗ Suicidal thoughts or attempt
- Rapamycin / sirolimus“I took it yesterday, and made me feel quite good, however today, I'm having a terrible back pain and body discomfort. I only took 1mg.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
If i overdo it, i crash.
In context ↗ - POTS & dysautonomia
all the heart and autonomic problems
In context ↗ - Light & noise sensitivity
light and sound sensitivity
In context ↗ - Breathlessness
as of now, it's mostly gone!
In context ↗ - Heart symptoms & palpitations
heart palpitation
In context ↗ - Muscle weakness
The fatigue and weakness was unreal too.
In context ↗ - Anxiety & low mood
I've been suffering from severe anxiety disorder since the age of 13
In context ↗ - Tinnitus
i had it in my right ear too. It was kind of scary but it's gone now.
In context ↗ - Mast cell (MCAS) & allergies
i've allergic reaction with Benadryl before
In context ↗
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