ME/CFS at Bell 10 after a crash, now much better at Bell 50 but still moderate
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
About 20 on the BELL scale throughout the year.
In context ↗ - At worst: Severe
in 2018 it got so bad that I was at a 10 for 1,5 years
In context ↗ - Now: Much better
I‘m still moderate, but not severe anymore. bell scale went from 30 to 50.
In context ↗ - Began after: glandular fever or EBV
when I had mono at 18 years old
Read from 14 of their posts and comments; links to the 8 this page draws on
Summary
Fell ill in 2011 with mono at 18, could not get out of bed for half a year and needed 18 months to get back on track. After better years they crashed in 2018 to Bell 10 for 18 months, and were at Bell 20 in 2020. Severe MCAS leaves them in constant pain, unable to take any painkiller and eating only potatoes, cauliflower and carrots. After moving out and separating from their husband in 2026 they rose from Bell 30 to 50, still moderate.
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What they tried
What they credit
Also tried
Their words about each treatment
- Prednisolone · Much worse
I‘m anaphylactic to prednisolone
In context ↗ - Ibuprofen · Worse
I’m always in pain and cannot even take an ibuprofen
In context ↗ - potatoes, cauliflower and carrots, salt, canola oil and water · Not said
At this point there is nothing more I can do than survive on potatoes, cauliflower and carrots, salt, canola oil and water for the rest of my life
In context ↗ - moving out and no longer managing his illnesses · Helped
I moved, lost my cat and broke up with my husband. Turns out: I managed \*his\* illnesses so much that there was no strength left for myself.
In context ↗
Approaches: Mould avoidance
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 |
|---|---|---|
| 2011 | mono at age 18; bedbound for half a yearI couldn't even get up from bed for half a year.In context ↗ | Severe |
| after 1 1/2 years | back almost to baseline for several good yearsAfter that time I almost got back to baseline and had several good years without too much fatigue.In context ↗ | Near normal |
| 2018 | crash to Bell 10 for about 18 monthsin 2018 it got so bad that I was at a 10 for 1,5 yearsIn context ↗ | Severe |
| 2020-05 | climbed slowly back to Bell 20I'm at 20 right now. ... Fighting my way back slowly.In context ↗ | Severe |
| 2026-05 | moved out and separated from husband; Bell 30 to 50I‘m still moderate, but not severe anymore. bell scale went from 30 to 50.In context ↗ | Moderate |
Adverse events
- “I have EDS and wearing them while laying down hurts my neck.” In context ↗ Other
- Corticosteroid pulses“I wish I had that option, I‘m anaphylactic to prednisolone.” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Their words about their symptoms
- Mast cell (MCAS) & allergies
In the summer months, I‘m severe as any pollen worsens my MCAS.
In context ↗ - Pain & fibromyalgia
I’m always in pain and cannot even take an ibuprofen.
In context ↗ - Neuropathy & tingling
I have constant tingling in hands and feet
In context ↗ - Light & noise sensitivity
I have earmuffs, too.
In context ↗
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