Barely leaving the house and not sleeping with ME/CFS, somewhat better with pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 7 months
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
I'm not diagnosed with me/cfs at this time but my fatigue runs a lot like it with PEM.
In context ↗ - At worst: Moderate
I barely work (wfh) anymore because the cognitive fatigue is almost instant. I barely leave the house because I can't safely drive
In context ↗ - Now: Somewhat better
Right now I'm "mild" (this scale is stupidly skewed) and I'm terrified of getting worse. I already can't work, am barely safe to drive, and have trouble feeding myself.
In context ↗ - Began after: another virus
I have had fatigue limiting my life since Jan, following a bad viral infection over Christmas.
In context ↗
Read from 14 of their posts and comments; links to the 9 this page draws on
Summary
They fell ill in January 2026 after a bad viral infection over Christmas, and by March they were barely working from home, barely leaving the house and not sleeping. Pacing and staying inside their energy limits slowly helped; by June they rated themselves at about 60% of their old capacity, working a couple of hours a day. By late July they still called themselves mildly affected, unable to work and barely safe to drive.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
By pacing myself and picking which things I'm going to do, I'm slowly recovering.
In context ↗ - rest in bed · Helped
I spent most of a week in bed and slowly I recovered.
In context ↗ - otc stuff · No change
I've tried the otc stuff that I have access to to try and help my body relax into it but it didn't make a difference.
In context ↗ - weed · Not said
will now periodically indulge because I need a break from my body
In context ↗ - iron pills · No change
There is no combination of meds/vitamins/iron pills that can get me above that.
In context ↗ - habit tracker grid · Helped
it's helping me notice patterns of what drains me the worst
In context ↗ - Fitbit Air · Helped
I've had the band on my wrist for about 12 hours so far and the data is great.
In context ↗ - Lamotrigine · Not said
Lamotrigine, low dose celexa, and Buspirone
In context ↗
Approaches: Pacing · Radical rest
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. The chart starts 2 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| January 2026 | fatigue began after a bad viral infection over ChristmasI have had fatigue limiting my life since Jan, following a bad viral infection over Christmas.In context ↗ | Not stated | |
| late February 2026 | crashed after doing paperwork while already tired; a week in bedI spent most of a week in bed and slowly I recovered.In context ↗ | Severe | |
| 2026-03-26 | barely working, barely leaving the house, unable to sleepI barely work (wfh) anymore because the cognitive fatigue is almost instant. I barely leave the house because I can't safely drive, socialize, and then drive home.In context ↗ | Moderate | |
| 2026-04-16 | stuck in bed after a hypomanic weekAfter a week of being fairly productive, today I am stuck in bed. ... I'm so tired that I can't even sit up and watch tv.In context ↗ | Severe | |
| 2026-06-08 | improved to about 60% of their capacity with pacing and restI'd say that I'm now running at about 60% of my full capacity. I can work a couple hours each day and can occasionally go out with friends.In context ↗ | Mild | Pacing and the energy envelope |
| 2026-07-28 | self-rated mild, cannot work, barely safe to drive, trouble feeding themselvesRight now I'm "mild" (this scale is stupidly skewed) and I'm terrified of getting worse.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
my fatigue runs a lot like it with PEM
In context ↗ - Brain fog
I barely work (wfh) anymore because the cognitive fatigue is almost instant
In context ↗ - Sleep problems
Tuesday night I slept from 12pm-3am. That's it. I was awake.
In context ↗ - Pain & fibromyalgia
I'm not getting random nerve pain and muscle cramps anymore
In context ↗ - Muscle weakness
My arms don't weigh a ton
In context ↗ - Anxiety & low mood
my system is so fried that I can't stop crying. Just total meltdown.
In context ↗ - POTS & dysautonomia
It caught my heart racing when I had a shower last night.
In context ↗
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