Mostly bedbound with ME/CFS, improved then relapsed after COVID and weight regain
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
My mecfs is from a mono/EBV infection 10 years ago.
In context ↗ - At worst: Severe
I pushed through mono and became mostly bedbound.
In context ↗ - Now: Relapsed
I had one brief period of remission and now I’m mild-moderate.
In context ↗ - Began after: glandular fever or EBV
My mecfs is from a mono/EBV infection 10 years ago.
In context ↗
Read from 31 of their posts and comments; links to the 16 this page draws on
Summary
Developed ME/CFS from mono/EBV around 2015 while starting a nursing job, becoming mostly bedbound and taking about eight months to reach mild. A later remission on keto, weight loss, better sleep and infertility supplements allowed jogging and gym sessions, but two COVID infections, depression and weight regain caused a relapse. A late-2025 POTS flare worsened from mild to severe and a suspected MCAS flare caused a rolling crash; by 2026 they were mild-moderate, and a low-histamine diet resolved constant brain fog.
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What they tried
What they credit
Also tried
Their words about each treatment
- keto · Helped
For me, eating keto and doing intermittent fasting helps a lot.
In context ↗ - myo-inositol · Helped
taking myo-inositol and coq10 for infertility reasons and I think all of that together took me from moderate to mild
In context ↗ - CPAP machine · Helped
Getting a CPAP machine has helped some.
In context ↗ - Lion's Mane Mushroom · Helped
The one thing I've found that helps me the most is Lion's Mane Mushroom.
In context ↗ - Zyrtec · Helped
It wasn’t enough for this flare so yesterday I took a second Zyrtec before dinner. It helped!
In context ↗ - famotidine · Not said
I take Zyrtec and Pepcid every morning.
In context ↗ - low histamine diet · Helped a lot
Going on a low histamine diet has completely resolved it.
In context ↗ - visible app · Helped
The visible app is helping me learn my limits and triggers.
In context ↗ - Ubrelvy · Helped
I’ve taken it and it works pretty well.
In context ↗ - Ajovy shot · Helped a lot
I get the Ajovy shot now which has reduced my daily headaches 90%.
In context ↗ - steroids · Worse
but it gave me gnarly anxiety and insomnia and I crashed hard after
In context ↗ - antibiotics · No change
They tested and treated me for strep at first and when antibiotics didn’t help after a few days I sought a second opinion.
In context ↗ - Epsom salt baths · Helped
Epsom salt baths help too.
In context ↗
Approaches: Diet · Supplements
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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| ~2015 | Mono/EBV while starting first nursing job; pushed through, mostly bedboundI pushed through mono and became mostly bedbound. I only left my bed to white knuckle it though work or grocery shop.In context ↗ | Severe | |
| ~7-8 months after onset | Recovered to mild, could leave the house for funIt took me a good 8 months to recover to mild.In context ↗ | Mild | |
| a few years later (before COVID) | Remission: weight lifting and light joggingI went into remission/mild. I could jog! Go to the gym! Do hobbies and activities!In context ↗ | Mild | Keto and low-carb diets |
| after COVID, before 2025 | COVID twice, depression, weight regainedThen I got covid twice and went in and out through bouts of dyathymia and depression which partly made me relapse.In context ↗ | Moderate | |
| October 2025 | Crashed after pushing too much in OctoberNow I'm in a moderate flare because I pushed too much and didn't rest enough in October.In context ↗ | Moderate | |
| November 2025 | Illness put sub-clinical POTS and mild MCAS into overdriveA recent illness put my sub-clinical pots and mild MCAS into overdrive.In context ↗ | Moderate | |
| 2025-12 | Low-histamine diet resolved constant brain fogMy constant mental fog was likely caused by MCAS. Going on a low histamine diet has completely resolved it.In context ↗ | Moderate | Low-histamine diet |
| 2026-06-29 | Mild-moderate after one brief period of remissionI had one brief period of remission and now I’m mild-moderate.In context ↗ | Moderate |
Adverse events
- Corticosteroid pulses“it gave me gnarly anxiety and insomnia and I crashed hard after” In context ↗ Mood or psychiatric effects
- Corticosteroid pulses“it gave me gnarly anxiety and insomnia and I crashed hard after” In context ↗ Insomnia from treatment
- Corticosteroid pulses“it gave me gnarly anxiety and insomnia and I crashed hard after. Don't recommend.” In context ↗ Made symptoms worse
- Intermittent fasting“Fasting makes my pots worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I'm in a rolling crash right now because I pushed too much in October
In context ↗ - Brain fog
My constant mental fog was likely caused by MCAS. Going on a low histamine diet has completely resolved it.
In context ↗ - POTS & dysautonomia
A new POTS diagnosis plus recent histamine intolerance has lowered my baseline.
In context ↗ - Mast cell (MCAS) & allergies
High histamine foods (seems I have a MCAS problem too) were flooding me with histamine
In context ↗ - Sleep problems
Body weight and sleep quality (mild OSA) affect my tolerance for activity
In context ↗ - Pain & fibromyalgia
massively helped my joint inflammation and hip bursitis
In context ↗ - Headaches & migraine
I get the Ajovy shot now which has reduced my daily headaches 90%.
In context ↗ - Gut problems
stomach cramps, nausea, diarrhea
In context ↗ - Breathlessness
It cured my breathing issues / chronic congestion
In context ↗ - Heart symptoms & palpitations
I’m flushed and hot and tachycardic while lying in bed
In context ↗ - Muscle weakness
20 years of being overweight and mostly sedentary have led to too much muscle weakness
In context ↗ - Anxiety & low mood
went in and out through bouts of dyathymia and depression
In context ↗ - Flu-like symptoms
the crushing fatigue and fevers and spleen engorgement
In context ↗
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