ME/CFS with post-exertional malaise, now somewhat better but needs rest days
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2025
In their words
- Condition: ME/CFS
my PEM was SO bad after
In context ↗ - At worst: Moderate
I sit down with my feet higher up on something, and the dopamines from having fun helps me to stay more awake
In context ↗ - Now: Somewhat better
it seems to have slowly improved my situation making me able to do other things like watering my plants etc in real life
In context ↗
Read from 7 of their posts and comments; links to the 4 this page draws on
Summary
Summit 14537 described being in a similar situation as a teenager, with better periods and later post-exertional malaise after overexertion. A trip to Pride about two years before writing caused PEM so bad it took six months to recover, and pregnancy made their fatigue much worse. By mid-2025 they paced activity, played computer games for enjoyment and dopamine, and could water plants and visit a hairdresser, but needed days of rest afterwards.
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What they tried
Also tried
Their words about each treatment
- computer games · Helped
it seems to have slowly improved my situation making me able to do other things like watering my plants
In context ↗ - pacing · Not said
I try to pace and sometimes try to push to do things that gives my life meaning
In context ↗ - pushing to do meaningful things · Helped
Sometimes it makes things worse but most often it makes things better. But I need to rest for days after
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| as a teenager | was ill with ME/CFS as a teenager, in a situation like a bedbound teenI have been in that situation too as a teenager.In context ↗ | Moderate |
| later | had better periods and managed a lotBut then I had better periods where I managed a lot!In context ↗ | Not stated |
| 2 years ago | went to Pride; PEM was very bad and took six months to get betterI went to pride with my sisterson 2 years ago and my PEM was SO bad after. It was the most fun I had all year but it took 6 months to get betterIn context ↗ | Not stated |
| 2025-05-09 | computer games slowly improved the situation and they could water plantsBut for me it seems to have slowly improved my situation making me able to do other things like watering my plants etc in real lifeIn context ↗ | Moderate |
| 2025-06-03 | paced and pushed for meaningful activity; hairdresser required days of restI try to pace and sometimes try to push to do things that gives my life meaning. ... But I need to rest for days after.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
But I need to rest for days after.
In context ↗