ME/CFS
Severe → much betterIll 11 months before improving or writing
Couch-bound with ME/CFS and gut problems, much better after MCAS diagnosis and medication
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 months
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
I have an appointment with the Mayo Clinic's EDS clinic in September where I feel like I'll get an ME/CFS diagnosis
In context ↗ - At worst: Severe
The symptoms slowly got worse until I was basically couch-bound for a few months and couldn't eat anything comfortably, even liquids.
In context ↗ - Now: Much better
Started on some medications and am finally able to eat without looking 6 months pregnant ... I've been a remote employee this whole time, but I have to figure out if going back into the office is possible
In context ↗ - Began after: COVID
About 2 weeks after Covid, I had a constant pain in my upper left abdomen, but I also started to develop intense fatigue, cyclical cold-like symptoms
In context ↗
Summary
A 26-year-old woman developed intense fatigue, cyclical flu-like symptoms and gut problems after catching COVID in August 2025, after an H. pylori infection earlier that year. She was couch-bound for months and could not eat comfortably until mast cell activation syndrome was diagnosed in April 2026 and medication let her eat again. Her flu-like episodes then became less frequent, though she still worked remotely and rested after busy days.
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What they tried
Also tried
Their words about each treatment
- exercise · Not said
I exercised 3-5 days per week
In context ↗ - H Pylori treatment · Not said
I went through treatment successfully, but still had some lingering symptoms
In context ↗ - some medications · Helped
Started on some medications and am finally able to eat without looking 6 months pregnant
In context ↗ - Zyrtec · Worse
when I was on it I would randomly sit up in my sleep which caused me to feel more tired in the morning
In context ↗ - Claritin · Not said
I now take Claritin daily and have no issues.
In context ↗ - extra electrolytes · Helped
it was important for me to get extra electrolytes and move around more
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| August 2025 | Caught COVID and rebounded; intense fatigue and cyclical flu-like symptoms began two weeks laterAbout 2 weeks after Covid, I had a constant pain in my upper left abdomen, but I also started to develop intense fatigue, cyclical cold-like symptomsIn context ↗ | Mild |
| autumn 2025 | Couch-bound for a few months, could not eat anything comfortablyThe symptoms slowly got worse until I was basically couch-bound for a few months and couldn't eat anything comfortably, even liquids.In context ↗ | Severe |
| January 2026 | Flu A, Crohn's testing, hives and lip swelling startingFlash forward to January, I got Flu A, was being tested for Crohn's disease, and started developing hives and lip swelling at night.In context ↗ | Moderate |
| April 2026 | MCAS diagnosed and medications started; able to eat againStarted on some medications and am finally able to eat without looking 6 months pregnantIn context ↗ | Mild |
| July 2026 | Flu-like episodes much less frequent; still working remotely and resting after busy daysthey still happen today but are much less frequent and not usually as intense as they wereIn context ↗ | Mild |
Adverse events
- Cetirizine (Zyrtec)“I did have withdrawal hives when I got off of it” In context ↗ Withdrawal problems
- Cetirizine (Zyrtec)“when I was on it I would randomly sit up in my sleep which caused me to feel more tired in the morning” In context ↗ Side effects
Symptoms mentioned
Brain fogFlu-like symptomsGut problemsMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
If I have a small MCAS attack or had a busy day/s (such as a wedding) then I usually lay around a lot and don't feel like doing much
In context ↗ - Brain fog
extreme fatigue, brain fog
In context ↗ - POTS & dysautonomia
Recently learned my dysautonomia symptoms are not just dysautonomia
In context ↗ - Mast cell (MCAS) & allergies
started developing hives and lip swelling at night
In context ↗ - Gut problems
We investigated stomach pain and diarrhea for months with no conclusions other than IBS.
In context ↗ - Flu-like symptoms
I'll feel like I have the flu (aches, fever, chills, night sweats, extreme fatigue, brain fog) the next day
In context ↗ - Temperature regulation
aches, fever, chills, night sweats
In context ↗