Long COVID with post-exertional malaise, in bed for days, now somewhat better
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 20 months
- Last post
- Jul 2026
In their words
- Condition: Long COVID
I’m 39F and have been living with long covid for the last 20 months
In context ↗ - At worst: Severe
leave me in the bed for days or weeks at a time
In context ↗ - Now: Somewhat better
it’s not as bad as it was early last year because those early days were infinitely worse
In context ↗ - Began after: COVID
have been living with long covid for the last 20 months
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
Vale 24888, 39, developed long COVID about 20 months before writing, with ME/CFS and post-exertional malaise. A short work trip started a flare a month before writing, worsened by washing her hair; such efforts can leave her in bed for days or weeks. She uses a mobility scooter to get out and says she is not as bad as early last year. She takes levocetirizine, Zyrtec, low-dose naltrexone and pre- and probiotics, but says nothing has helped yet; NAC made her vomit.
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What they tried
Also tried
Their words about each treatment
- levocetirizine and Zyrtec · No change
I actually do take antihistamines. I take levocetirizine and Zyrtec ... The former hasn’t done much apart from keeping my allergies at bay.
In context ↗ - LDN · Not said
am on the starter dose of LDN
In context ↗ - pre and probiotics · No change
have been taking pre and probiotics to try and balance my flora ... nothing has helped just yet
In context ↗ - NAC · Worse
I had a horrible reaction to NAC. Like dang near projectile vomiting so that wasn’t working for me either.
In context ↗ - pills, creams and shampoos · No change
I did pills, creams, shampoos
In context ↗ - biologic medication · Helped a lot
starting shots has been the only thing that made the flaking, visible inflammation, and pain of my condition go away
In context ↗
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 says too little to place on the scale and is only in the table. The line stops at their last step that can be placed; how they are now is in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | developed long COVID, then ME/CFS with post-exertional malaiseI’m 39F and have been living with long covid for the last 20 months.In context ↗ | Severe |
| early last year | worst period, far worse than nowit’s not as bad as it was early last year because those early days were infinitely worseIn context ↗ | Severe |
| September 2025 | flare after a short work trip, worsened by washing her hairthis flare started with me going on a short work trip a month ago and was worsened by me taking 15 extra minutes to wash my hairIn context ↗ | Moderate |
| July 2026 | still living with LC and scalp psoriasisAs someone who had pretty painful scalp psoriasis and LCIn context ↗ | Not stated |
Adverse events
- NAC (N-acetylcysteine)“I had a horrible reaction to NAC. Like dang near projectile vomiting so that wasn’t working for me either.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
the stupid post exertion malaise (PEM)
In context ↗ - Pain & fibromyalgia
the chest and leg pains and pressure
In context ↗ - Mast cell (MCAS) & allergies
keeping my allergies at bay
In context ↗