ME/CFS with 18-hour sleeps and PEM, now somewhat better after diet changes and PEA
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 17 years
- Last post
- Mar 2025
In their words
- Condition: ME/CFS
led to my CFS diagnosis in 2008
In context ↗ - At worst: Severe
I rode on a train for the first time in over 3 years!
In context ↗ - Now: Somewhat better
I rode on a train for the first time in over 3 years!
In context ↗ - Began after: another virus
the initial onset virus that left me sleeping 18 hours a day and led to my CFS diagnosis in 2008
In context ↗
Read from 15 of their posts and comments; links to the 10 this page draws on
Summary
Osprey 59020 fell ill in 2008 after a virus that left them sleeping 18 hours a day and led to a CFS diagnosis. They remained noise-sensitive and prone to PEM, pacing with a heart-rate watch and using noise-cancelling headphones. An elimination diet cutting dairy and sugar helped, and cutting sugar reduced muscle pain and PEM flares; PEA took the edge off chronic pain. In 2024 they managed a short train ride, and in 2025 they had their best sleep since onset.
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What they tried
What they credit
Also tried
Their words about each treatment
- Sony WH 1000 XM3 noise cancelling headphones · Helped
They've been the most helpful tool I've bought for managing ME/CFS related stuff by far.
In context ↗ - Loop buds · Helped
I've tried Loop buds in those scenarios before and they do block noise pretty well
In context ↗ - Nilstat/Nystatin and antifungal courses · Worse
over the counter stuff like Nilstat/Nystatin (which made it worse)
In context ↗ - prebiotics/probiotics · Not said
various prebiotics/probiotics
In context ↗ - antibiotics · Worse
a few courses of antibiotics/anti-fungals which absolutely destroyed my immune system
In context ↗ - digestive enzymes/vege enzymes · No change
Didn't do anything for my tongue
In context ↗ - elimination diet · Helped a lot
The most effective thing for me in the end was an elimination diet. ... Cutting sugar has massively reduced the severity of my day to day muscle pain and PEM flares though
In context ↗ - Garmin Venu 3 · Helped
Got a Garmin Venu 3 about two weeks ago for much the same reason as you ... It's been excellent for heart rate tracking so far.
In context ↗ - PEA supplement (PEA 600) · Helped
I've had some success with a PEA supplement (PEA 600) ... By itself, the PEA slightly dulls my day to day muscle and joint pain.
In context ↗ - SPM Active · Helped
another supplement called SPM Active which helps with PEM recovery
In context ↗ - pacing · Helped
I've had much more success with pacing by using the HR graph than anything else.
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 | After |
|---|---|---|---|
| 2008 | viral onset, sleeping 18 hours a day, CFS diagnosisthe initial onset virus that left me sleeping 18 hours a day and led to my CFS diagnosis in 2008In context ↗ | Severe | |
| 2024-07-31 | ate a gluten-free, dairy-free pastry without a big crash, first croissant in almost a decadeI had a croissant for the first time in almost a decade! And it only gave me some little jitters instead of a big crash!In context ↗ | Moderate | |
| 2024-08-21 | first train ride in over three yearsI rode on a train for the first time in over 3 years!In context ↗ | Moderate | |
| 2025-02-28 | best patch of sleep since onset after schedule adjustment and pacingIt's easily the best patch of sleep I've had since the initial onset virusIn context ↗ | Moderate | Pacing and the energy envelope |
Adverse events
- Nystatin“Nilstat/Nystatin (which made it worse)” In context ↗ Made symptoms worse
- Antibiotics (unspecified)“a few courses of antibiotics/anti-fungals which absolutely destroyed my immune system” In context ↗ Other
- Nystatin“a few courses of antibiotics/anti-fungals which absolutely destroyed my immune system” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if there's a reading over 106 bpm in the last 48 hours, I'm going to be dealing with PEM
In context ↗ - Light & noise sensitivity
they've been life-changing for this very noise sensitive person
In context ↗ - Pain & fibromyalgia
the PEA slightly dulls my day to day muscle and joint pain
In context ↗ - Sleep problems
I'm a neurodivergent night owl who sleeps lightly
In context ↗ - Brain fog
More info to process when I've got the brain space to do it.
In context ↗ - Gut problems
digestive issues and months of constant UTIs
In context ↗ - Anxiety & low mood
the songs I was listening to when extremely depressed or dissociating
In context ↗ - POTS & dysautonomia
how much of an impact bending down and standing up to load the dishwasher or washing machine have on my HR
In context ↗
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