ME/CFS in teens, could do almost nothing for years, now much better after relapse
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- a good few years
- Last post
- Apr 2022
In their words
- Condition: ME/CFS
I was originally diagnosed in my teens and it ended up sort of ruining my planned life trajectory. ... my ME came back with a vengeance
In context ↗ - At worst: Moderate
I ended up dropping out of college and basically just doing nothing because that's all I had the strength to do.
In context ↗ - Now: Much better
After the initial awful year it has now started to subside again (I went for a hike a few weeks ago and wasn't bed bound the next day
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Diagnosed with ME/CFS in their teens, they dropped out of college and could do almost nothing for a few years. In their 20s they rebuilt for seven years, travelled and held a career, with energy still below normal. A stressful carer role during the pandemic caused a relapse; after an awful first year symptoms have begun to subside, and a recent hike no longer left them bed-bound, though their legs still give way after ten minutes on bad days.
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What they tried
What they credit
Their words about each treatment
- not overdoing it · Helped
as long as I was cognizant of not overdoing it I was generally fine
In context ↗
Approaches: Pacing
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| teens | diagnosed with ME/CFS in teensI was originally diagnosed in my teens and it ended up sort of ruining my planned life trajectory.In context ↗ | Moderate |
| teens | dropped out of college, able to do almost nothingI ended up dropping out of college and basically just doing nothing because that's all I had the strength to do.In context ↗ | Moderate |
| 20s | felt okay again and rebuilt life for about seven yearsin my 20s I started to feel okay again. For probably 7 years or so I managed to rebuild.In context ↗ | Mild |
| during the pandemic | relapse after carer stress during the pandemicThe stress of this carer role, coupled with a global pandemic and a full time job that I was trying to do part time apparently was too much and my ME came back with a vengeance.In context ↗ | Severe |
| 2022 | symptoms subsiding; hiked without being bed-bound the next dayAfter the initial awful year it has now started to subside again ... I went for a hike a few weeks ago and wasn't bed bound the next dayIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I went for a hike a few weeks ago and wasn't bed bound the next day
In context ↗ - Muscle weakness
I can walk for sometimes just 10 minutes or so and they'll completely give way on me
In context ↗
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