ME/CFS crash with PEM, somewhat better after starting slowly and compression pants
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- Not stated
- Last post
- Apr 2025
In their words
- Condition: ME/CFS
Fast forward several years to the crash that led to ME/CFS diagnosis.
In context ↗ - At worst: Mild
Starting slowly and wearing compression pants when I walked helped me build the capacity to take my dog out for gentle walks.
In context ↗ - Now: Somewhat better
Starting slowly and wearing compression pants when I walked helped me build the capacity to take my dog out for gentle walks.
In context ↗ - Began after: glandular fever or EBV
I had severe glandular fever from the EBV…recovered and went about life as normal or so I thought
In context ↗
Summary
After severe glandular fever from EBV they pushed on until a crash years later led to an ME/CFS diagnosis, with POTS diagnosed later. They describe PEM taking days to recover, crappy sleep, days-long headaches, muscle pain, light and sound sensitivity, word loss, temperature intolerance and swollen nodes, and histamine issues since COVID. Their latest post credits starting slowly and compression pants for building capacity for gentle dog walks.
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What they tried
What they credit
Also tried
Their words about each treatment
- pushing through · Worse
what I was really doing was pushing myself then crashing
In context ↗ - starting slowly and stopping before symptoms kicked in · Helped
The biggest challenge was stopping before symptoms kicked in on those days when I felt almost human.
In context ↗ - compression pants · Helped
wearing compression pants when I walked helped me build
In context ↗
Approaches: POTS medication · Pacing
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | severe glandular fever from EBVI had severe glandular fever from the EBV…recovered and went about life as normal or so I thoughtIn context ↗ | Not stated | |
| — | crash leading to ME/CFS diagnosis after years of pushing and crashingFast forward several years to the crash that led to ME/CFS diagnosis.In context ↗ | Not stated | |
| 2025-04-11 | built capacity for gentle dog walksStarting slowly and wearing compression pants when I walked helped me build the capacity to take my dog out for gentle walks.In context ↗ | Mild | Pacing and the energy envelope |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM after overdoing physical activities.. takes days to recover
In context ↗ - Headaches & migraine
Headaches that last days and are unresponsive to medication
In context ↗ - Pain & fibromyalgia
Muscle pain esp quads and traps
In context ↗ - Light & noise sensitivity
Extremely hypersensitive to light and sound
In context ↗ - Brain fog
Neurologically I ‘lose words’
In context ↗ - POTS & dysautonomia
POTS (diagnosed after my ME was diagnosed)
In context ↗ - Temperature regulation
Can’t deal with heat or when it’s very cold
In context ↗ - Flu-like symptoms
Swollen lymph nodes… worse when I have PEM
In context ↗ - Mast cell (MCAS) & allergies
Food and chemical sensitivity …diagnosed gluten intolerance years ago and strong perfume gives me horrible headaches ( since COVID I’ve also developed issues with histamine )
In context ↗
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