ME/CFS
Severe → somewhat better
ME/CFS, 16-hour sleep and getting to bathroom difficult, now somewhat better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
i haven’t figured out when i’m in PEM and when i’m not
In context ↗ - At worst: Severe
i was sleeping 16 hours a day last week, found it difficult to even get up and go to the bathroom
In context ↗ - Now: Somewhat better
now i feel relatively normal? my movements are still slow and it’s still difficult for me to do anything
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
Glade 13311 posted in r/cfs in January 2026 after a week of sleeping 16 hours a day when even getting up to the bathroom was difficult. Days later they felt relatively normal, though movements were still slow and doing anything remained hard; propranolol for anxiety gave them bad shortness of breath on exertion.
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What they tried
Also tried
Their words about each treatment
- diaphragmatic breathing retraining · Not said
i’ve been retraining myself to breathe with my diaphragm, and it HURTS if i do it for too long
In context ↗ - melatonin · Helped
the only reason why i slept at all was because i took melatonin
In context ↗ - occupational therapy · Not said
when i have a session with my OT, i can only keep focus for around 30 minutes
In context ↗ - propranolol · Worse
i do have beta blockers! propranolol for anxiety. but it tends to give me really bad shortness of breath whenever i do anything physical for some reason
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| week before 2026-01-20 | sleeping 16 hours a day, hard to get up to the bathroomi was sleeping 16 hours a day last week, found it difficult to even get up and go to the bathroomIn context ↗ | Severe |
| 2026-01-20 | sleep flipped: awake 18 hours, about 6 hours' sleep after melatoninnow i feel relatively normal? my movements are still slow and it’s still difficult for me to do anythingIn context ↗ | Moderate |
Adverse events
- Meditation, yoga, breathwork“i’ve been retraining myself to breathe with my diaphragm, and it HURTS if i do it for too long. that muscle has been so inactive that diaphragmatic breathing for about 2 minutes makes me feel like the aftermath of hiccups” In context ↗ Other
- Propranolol (Inderal)“i do have beta blockers! propranolol for anxiety. but it tends to give me really bad shortness of breath whenever i do anything physical for some reason” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Sleep problems
i was sleeping 16 hours a day last week, found it difficult to even get up and go to the bathroom
In context ↗ - Post-exertional malaise
i haven’t figured out when i’m in PEM and when i’m not
In context ↗ - Brain fog
when i have a session with my OT, i can only keep focus for around 30 minutes
In context ↗ - Anxiety & low mood
my nervous system is so overactive from 50 too many panic attacks in my life holy shit
In context ↗ - Breathlessness
it tends to give me really bad shortness of breath whenever i do anything physical for some reason
In context ↗