ME/CFS
Severe → no benefit
Unrefreshing sleep and all-day incapacitation with ME/CFS, no benefit from medication
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Oct 2019
In their words
- Condition: ME/CFS
Seems insomnia is quite common with CFS for whatever reason.
In context ↗ - At worst: Severe
I spend all day incapacitated
In context ↗ - Now: No benefit
but I can’t sleep, and nothing helps
In context ↗
Summary
Posting in an ME/CFS forum in 2019, Orchid 66509 described sleep that left them unrefreshed however long they slept, all-day incapacitation, and at least one time not remembering driving to the store. Crashes brought a racing mind, dense fog and insomnia, and prescription controlled medication no longer helped. A move to a state in an earlier time zone briefly restored 7-7.5 hours of sleep before midnight, but that gain was lost.
Ask Miruvor AI
What they tried
Their words about each treatment
- RX controlled meds · No change
I attributed it prior to my ADHD but it wasn’t ever THIS BAD to where RX controlled meds don’t help at all.
In context ↗ - moved to a state whose time is behind · Helped
I moved to a state who’s time is behind and suddenly I slept normal, before midnight, getting 7-7.5 hrs. Much better. Miss it.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 2019-01-13 | sleep is unrefreshing no matter when or how long they sleepIt doesn’t matter when I sleep or how long I sleep I still feel the same.In context ↗ |
| 2019-10-09 | crashes with racing mind, dense fog and insomnia, spending all day incapacitatedI spend all day incapacitatedIn context ↗ |
| — | after moving to a state in an earlier time zone, slept normally before midnight for 7-7.5 hoursI moved to a state who’s time is behind and suddenly I slept normal, before midnight, getting 7-7.5 hrs.In context ↗ |
| — | the better sleep was lostMuch better. Miss it.In context ↗ |
| 2019-10-09 | still crashing with insomnia, dense fog and unrefreshing sleepI can’t sleep, and nothing helps.In context ↗ |
Symptoms mentioned
Their words about their symptoms
- Sleep problems
It doesn’t matter when I sleep or how long I sleep I still feel the same.
In context ↗ - Brain fog
Dense fog, but I can’t sleep, and nothing helps.
In context ↗ - Post-exertional malaise
Get overtired, in a crash, can’t sleep, mind goes haywire, and I feel like hell.
In context ↗