ME/CFS needing 14 hours of sleep a day, improved then declined again
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
even before getting ME/CFS
In context ↗ - At worst: Moderate
needing about 14h of sleep on an average day. I used to fall asleep everywhere trying to go about my life
In context ↗ - Now: Relapsed
I was very slowly showing improvement over three years (all still within moderate, but just about noticeable) and in the past couple months have been slowly declining again
In context ↗
Read from 12 of their posts and comments; links to the 8 this page draws on
Summary
Puffin 18253 fell ill around 2022 with ME/CFS, needing about 14 hours of sleep a day and falling asleep while trying to live normally. They slowly improved over three years but stayed within a moderate level, then declined again in late 2025. Neighbour noise in their UK flat caused repeated crashes and panic attacks; zolpidem or Phenergan was taken as needed. They remained too ill to work, managing one short outing a week at most.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- Phenergan (antihistamine) · Helped
Honestly I often cheat and take half an antihistamine, the kind that makes you sleepy. Mine is Phenergan (GP prescribed). It’s nice because it helps my runny nose too
In context ↗ - Pacing / daily energy quota · Helped
I think I must’ve been optimising my daily energy quota ... I had far fewer crashes than before.
In context ↗ - One hot meal a day and fruit snacks · Helped
now I try to have one hot meal a day (home cooked if possible, ready meal/takeout if not) and snack when I have to, ideally on fruit. That’s just what worked for me
In context ↗ - Keeping sensory stimulation to a minimum · Helped a lot
For me, keeping sensory stimulation to a minimum has helped immensely.
In context ↗ - Zolpidem · Not said
Currently I take sleep medication when necessary (zolpidem or phenergan), but I’m beginning to rely on it and I’m still crashing.
In context ↗ - Magnesium · Worse
I’ve tried magnesium but it gives me insomnia.
In context ↗ - Trazodone · No change
Trazodone did nothing
In context ↗ - Mirtazapine · Worse
mirtazapine made me terrifyingly ravenous
In context ↗
Approaches: Pacing
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 |
|---|---|---|
| onset | fell ill with ME/CFS, sleeping about 14 hours a dayI was similar when I first got sick, needing about 14h of sleep on an average day.In context ↗ | Moderate |
| 2025-10-27 | sleep need slowly fell from 14 to 10-12 hours over three yearsAfter about a year it slowly decreased, and now (3+ years later) it’s around 10-12h, when not in a crash.In context ↗ | Moderate |
| 2026-01-22 | slow decline over a couple of months after using up daily energyI was very slowly showing improvement over three years (all still within moderate, but just about noticeable) and in the past couple months have been slowly declining again.In context ↗ | Moderate |
| 2026-09-29 | repeated crashes from neighbour noise, too ill to workI’d say I’m mild-moderate, but as you can imagine, this problem is causing me to crash repeatedly.In context ↗ | Moderate |
Adverse events
- Magnesium“I’ve tried magnesium but it gives me insomnia.” In context ↗ Insomnia from treatment
- Mirtazapine (Remeron)“mirtazapine made me terrifyingly ravenous.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Sleep problems
needing about 14h of sleep on an average day
In context ↗ - Light & noise sensitivity
keeping sensory stimulation to a minimum has helped immensely
In context ↗ - Anxiety & low mood
some days I have multiple panic attacks a day over a little noise
In context ↗ - Brain fog
cognitive stuff is hard on me
In context ↗ - Gut problems
I tried relying more on ready meals at some point and it frequently gave me diarrhoea.
In context ↗ - Muscle weakness
Only snacks (mainly carbs) just made me feel awful and dead-limbed.
In context ↗
Ask Miruvor AI
Similar stories
-
Unable to walk around house with long COVID, much better after pacing and antihistamines
A Canadian man with long COVID for about three years was unable to walk around the house for the first two years, with constant migraines, brain fog and PEM. From year three, pacing, rest, stress reduction, H1/H2 antihistamines, hydroxyzine for sleep,…
-
Mostly bedbound and housebound with ME/CFS, pacing and rest helped before a relapse
Valley 16092 has had ME/CFS and fibromyalgia for about 25 years; stress and lifelong health problems led to a crash from 60-hour workweeks. They never became severe but have been mostly bedbound and housebound, and pacing, rest and comorbidity medication…
-
Mostly housebound with ME/CFS, now a little better on Klonopin and low-dose naltrexone
Joseph, 47, in Los Angeles, developed ME/CFS in January 2024, about 18 days after a second COVID infection. He declined from mild to the bad end of moderate over six months, becoming mostly housebound. Klonopin, low-dose naltrexone, midodrine and propranolol…
-
Long COVID brain fog, somewhat better with nicotine patch and naltrexone
Pebble 25278 developed long COVID with brain fog, distorted smell, headaches, nerve pain and trouble sleeping. A quarter of a 10 mg nicotine patch restored much of their speech and thinking, and low-dose naltrexone further raised their cognitive and physical…