ME/CFS with unrelenting fatigue and PEM, now worse while waiting for care
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 7 months
- Last post
- Mar 2026
In their words
- Condition: ME/CFS
normal day to day m.e symptoms
In context ↗ - At worst: Moderate
I almost got fired for how bad my performance got and time off to establish treatment was the solution to that.
In context ↗ - Now: No benefit
the feeling of having been run over by a semi repeatedly in my sleep has gotten worse
In context ↗
Summary
After about six months of symptoms they were diagnosed with ME/CFS and took a six-week medical leave, describing unrelenting fatigue, cognitive decline, PEM with swollen throat and migraines, poor sleep, heart problems and poor appetite. Repeated flares dented their baseline, and by March 2026 back-to-back stress and unrefreshing sleep left them worse. They reported slow care with no actual rehab yet and worsening while waiting.
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What they tried
Also tried
Their words about each treatment
- visible band · Not said
Ive got a visible band and I love it for having recorded heart data
In context ↗ - meds · Not said
My meds knock me out fully for hours at night but I dont feel like ive slept at all usually
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. The chart starts 6 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | symptoms beganI was diagnosed a few months ago, after about 6 months of symptoms.In context ↗ | Not stated |
| 2026-02-25 | repeated flares dented baseline while on six-week medical leaveperiods of back to back flares or flares that last more than 2 or 3 days put a dent in my baseline.In context ↗ | Moderate |
| 2026-03-13 | worse after back-to-back stress and unrefreshing sleepthe feeling of having been run over by a semi repeatedly in my sleep has gotten worseIn context ↗ | Moderate |
Adverse events
- “My meds knock me out fully for hours at night but I dont feel like ive slept at all usually, and the feeling of having been run over by a semi repeatedly in my sleep has gotten worse.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
obviously PEM, coming with swollen throat, migraines, allodynia and friends
In context ↗ - Brain fog
intense unrelenting fatigue, cognitive decline
In context ↗ - Sleep problems
My meds knock me out fully for hours at night but I dont feel like ive slept at all usually
In context ↗ - Flu-like symptoms
coming with swollen throat
In context ↗ - Heart symptoms & palpitations
I already have clear heart problems
In context ↗ - Anxiety & low mood
CONSTANTLY burnt out emotionally
In context ↗ - Gut problems
i can't really poop much out either other than whatever water I could drink that day
In context ↗ - Pain & fibromyalgia
the feeling of having been run over by a semi repeatedly in my sleep has gotten worse
In context ↗ - Muscle weakness
periodic limbs paralysis
In context ↗