ME/CFS
Severe → somewhat betterIll 14 years before improving or writing
ME/CFS after glandular fever, constant exhaustion and brain fog, somewhat better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 14 years
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
I was diagnosed with CFS over 10 years ago
In context ↗ - At worst: Severe
the first couple years were moderate-severe where I had to drop out of uni and was sleeping over 16 hours a day and constantly sick
In context ↗ - Now: Somewhat better
For the last 5-6 years I have been able to work full time in a pretty stressful job and complete further studies however my physical capabilities felt more limiting. Since having kids and especially my last kid I am beyond exhausted
In context ↗ - Began after: glandular fever or EBV
When I was 18 I got glandular fever and this eventually turned into chronic fatigue.
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
After glandular fever at 18 she developed chronic fatigue, moderate-severe for the first two to three years, dropping out of university and sleeping over 16 hours a day. She then lived mildly for about a decade, working full time in recent years. A second baby, breastfeeding and broken sleep worsened her to constant exhaustion, weak heavy arms and brain fog by early 2026, when she doubted the diagnosis. A naturopath brought no improvement and exercise sometimes led to crashes.
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What they tried
Also tried
naturopath· No changeexercise· Worse
Their words about each treatment
- exercise · Worse
I try to exercise and start to feel good then I just crash and have to take a week or so off
In context ↗ - naturopath · No change
working with a naturopath for 3 months now to reach optimum levels but not finding much improvement in symptoms unfortunately
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 |
|---|---|---|
| age 18 (about 2011) | Glandular fever turned into chronic fatigue; first years moderate-severe, dropped out of university, sleeping over 16 hours a dayWhen I was first diagnosed the first couple years were moderate-severe where I had to drop out of uni and was sleeping over 16 hours a day and constantly sick.In context ↗ | Severe |
| about 2020-2021 (last 5-6 years) | Lived somewhat normally for years, worked full time and studied furtherFor the last 5-6 years I have been able to work full time in a pretty stressful job and complete further studies however my physical capabilities felt more limiting.In context ↗ | Mild |
| 2025 | Worsened after second baby, breastfeeding and broken sleepSince having another baby and breastfeeding, and sleep deprivation, I feel my symptoms worsening.In context ↗ | Moderate |
| 2026-02 | Still constantly exhausted and weak raising two young children, doubting the CFS diagnosisSince having kids and especially my last kid I am beyond exhausted. I feel brokenIn context ↗ | Moderate |
Symptoms mentioned
Brain fogFlu-like symptomsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Muscle weakness
my arms feel like they don’t work
In context ↗ - Pain & fibromyalgia
I have constant aches and pains
In context ↗ - Light & noise sensitivity
sensitive to the light
In context ↗ - Temperature regulation
I get cold very easily as well
In context ↗ - Sleep problems
and just feel exhausted no matter how much sleep I get
In context ↗ - Brain fog
My brain fog is worsening too and I’m forgetting so many things mid sentence lately.
In context ↗ - POTS & dysautonomia
I only feel like I’m ok when I’m lying down. Sitting or standing is hard
In context ↗ - Post-exertional malaise
I try to exercise and start to feel good then I just crash and have to take a week or so off
In context ↗ - Neuropathy & tingling
It’s almost like a restless leg irritation but in my arms
In context ↗ - Flu-like symptoms
sleeping over 16 hours a day and constantly sick
In context ↗