ME/CFS stopped full-time work; now mild, pottering about with PEM still limiting
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 7.5 years
- Last post
- May 2025
In their words
- Condition: ME/CFS
I have mild CFS (was moderate and improved for a bit then plateaued for the last year), with PEM.
In context ↗ - At worst: Moderate
I have mild CFS (was moderate and improved for a bit then plateaued for the last year), with PEM.
In context ↗ - Now: Somewhat better
I'm able to putter around the house for several hours a day, or even run a (slow) errand or two, as long as I don't do anything that takes muscle effort
In context ↗ - Began after: another virus
after being really sick for six weeks with some upper respiratory virus
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
Sandpiper 56991 dates their ME/CFS to late 2017, when an upper respiratory virus stopped them working full time. They were working about 20 hours a week by late 2022; the Levine Protocol caused a severe crash six weeks in, with brain fog, dizziness and muscles giving out; it lowered their baseline and they went on leave. They later improved from moderate to mild, able to potter about the house and run an errand, and plateaued there, with PEM still limiting them.
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What they tried
What they credit
Also tried
Their words about each treatment
- pushing back up to more full time hours · Worse
I’ve tried to push back up to more full time hours multiple times and always crash
In context ↗ - Levine Protocol · Much worse
Did the Levine Protocol, and it was fine at first, but about six weeks in ... I got BAD PEM
In context ↗ - meditation · Helped
I find both journaling and meditation to be helpful for calming my brain.
In context ↗ - journaling · Helped
Journaling often helps me figure out what is *really* bothering me
In context ↗ - “breakfast and nap” routine · Helped
if I can do that for a few days, I can usually get to a point where I can go to sleep earlier
In context ↗ - Benadryl · Helped
sometimes with the aid of a Benadryl
In context ↗ - psychiatric meds · Helped
psychiatric meds helped stabilize my depression and PTSD symptoms
In context ↗ - therapy · Helped a lot
years of therapy were what really helped me heal and get to a point where my depression symptoms are almost gone
In context ↗
Approaches: CBT & mindset
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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| late 2017 | ME/CFS after an upper respiratory virus; stopped working full timestopped being able to work full time in late 2017 after being really sick for six weeks with some upper respiratory virusIn context ↗ | Mild |
| 2022 | crashed on the Levine Protocol and went on leave from workabout six weeks in, I got to a part that just felt a lot harder ... I got BAD PEMIn context ↗ | Moderate |
| — | improved from moderate to mild, then plateauedwas moderate and improved for a bit then plateaued for the last yearIn context ↗ | Mild |
| 2025-05-04 | mild CFS, pottering around the house and running errandsI'm able to putter around the house for several hours a day, or even run a (slow) errand or twoIn context ↗ | Mild |
Adverse events
- Meditation, yoga, breathwork“Meditation sometimes makes me more emotional in the moment?” In context ↗ Mood or psychiatric effects
- Graded rehab and self-made programmes“I got BAD PEM - nearly fell off my bike multiple times in one ride because my muscles kept giving out, terrible brain fog, constant dizziness.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I’ve tried to push back up to more full time hours multiple times and always crash
In context ↗ - Brain fog
get bad brain fog
In context ↗ - POTS & dysautonomia
When I’m symptomatic, I’m dizzy
In context ↗ - Sleep problems
My norm is sleeping 9-10 hours a day
In context ↗ - Heart symptoms & palpitations
Sometimes my heart rate goes up more than it should
In context ↗ - Muscle weakness
nearly fell off my bike multiple times in one ride because my muscles kept giving out
In context ↗ - Anxiety & low mood
my depression symptoms are almost gone
In context ↗
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