ME/CFS
Moderate → no benefitIll for 47 yearsNeeds ongoing treatment
Lifelong exhaustion with ME/CFS, days on the couch, now worse with no improvement
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 47 years
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
My entire life, I've been tired. I never really feel rested.
In context ↗ - At worst: Moderate
I'm not totally bedbound because I can go to the doctors and important stuff like that. But that's it. Otherwise, I'm on the couch. Everyday. All day.
In context ↗ - Now: No benefit
Recently, it's just gotten worse.
In context ↗ - Began after: another virus
When I was 3 years old, I spent 2 weeks in the hospital for a massive herpes infection.
In context ↗
Summary
The user, undiagnosed, described lifelong exhaustion and wondered if a severe herpes infection at age 3, which put them in hospital for two weeks, was the trigger. They never felt rested, spent their days on the couch and were treated for depression, which was treatment resistant, and insomnia with sleep medications; they also have delayed sleep phase disorder, which is well handled. Recently the tiredness worsened and they stayed on the couch all day, leaving home only for medical appointments and important errands.
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What they tried
Also tried
sleep medications· Helpedantidepressants· No change
Their words about each treatment
- sleep medications · Helped
I take 4 different medications for insomnia. I sleep now. I don't sleep without meds.
In context ↗ - antidepressants · No change
nothing really works. I'm currently on max dosages
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 |
|---|---|
| age 3 | massive herpes infection, two weeks in hospitalWhen I was 3 years old, I spent 2 weeks in the hospital for a massive herpes infection.In context ↗ |
| age 18 | lifelong tiredness, always on the couchI found a pic of me at 18, lying on the couch.In context ↗ |
| recently, 2025 | got worse; on the couch all day, only leaves for doctorsRecently, it's just gotten worse.In context ↗ |
| December 2025 | all day on the couch, leaves home only for medical appointmentsI spend all day on my couch, wrapped in a blanket, watching TV and scrolling.In context ↗ |
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I take all the sleep meds to fight insomnia. Still wake up tired.
In context ↗ - Sleep problems
I also have delayed sleep phase disorder. My circadian rhythm thinks night is day.
In context ↗ - Anxiety & low mood
I've been diagnosed and treated for depression.
In context ↗ - Hair loss
My hair fell out.
In context ↗ - Temperature regulation
I had a fever of 103.
In context ↗