Mostly in bed with ME/CFS for years, now recovered after slowly rebuilding activity
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- Jun 2019
In their words
- Condition: ME/CFS
I concluded it was CFS for a number of reasons including: the symptoms, fatigue as the all-pervasive symptom
In context ↗ - At worst: Severe
After waking up ,I would spend most of the day in bed reading random bits about history or news and the like and even with that light schedule, I always needed to spend many hours in bed doing absolutely nothing
In context ↗ - Now: Recovered
I live now a normal life with school, part time work, friends, and daily strenuous exercise.
In context ↗ - Began after: another virus
until I fell down with a flu
Summary
They self-diagnosed CFS after a flu in 2010, their fourth year of high school, and were ill for about seven years, spending several years mostly in bed after leaving university. They recovered over some weeks after reading about pain-related fear and underuse and slowly rebuilding activity, without graded exercise. By 2019 they had a normal life with part-time work, friends and daily strenuous exercise, though a fear of fatigue persisted.
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What they tried
What they credit
Also tried
Their words about each treatment
- walking and jogging on a treadmill · Worse
I went from lightly jogging on a treadmill for 2 hours to experiencing exhaustion after just 30-35 minutes
In context ↗ - weight loss · Helped
This inspired me enormously. If I can overcome this great hurdle that had plagued my life since childhood through patience and steady effort, what about CFS?
In context ↗ - warm baths and meditation · Helped a lot
I stated taking warm baths in my tub ... I was meditating
In context ↗ - pain-memory / fear-of-pain concept · Helped a lot
For me this idea could be easily extended over to what I had been going through. And indeed from that realization on I slowly worked my way up to full recovery.
In context ↗ - slowly increasing activity levels · Helped
My recovery involved slowly increasing activity levels simply because I was not 100% certain that I was on the right path
In context ↗
Approaches: Brain retraining · Mind-body practices
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 |
|---|---|---|
| 2010 | mild CFS symptoms began during heavy dieting and exerciseMy body and especially my mind were already experiencing a mild form of CFS with the most troublesome symptom being a decreased ability to exerciseIn context ↗ | Mild |
| 2010 | flu left them devastated; then years mostly in bedThe flu totally devastated me like no other illness in my lifeIn context ↗ | Severe |
| 2013 | gave up their Bachelors and spent 3-4 years in a cocoon-like stateI spent the next 3-4 years of my life in a cocoon-like stateIn context ↗ | Severe |
| about 2017 | weight loss, then realization about hypersensitivity; slow return to normal functioningfrom that realization on I slowly worked my way up to full recoveryIn context ↗ | Recovered |
| 2019-06-15 | living a normal lifeI live now a normal life with school, part time work, friends, and daily strenuous exerciseIn context ↗ | Recovered |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
The more strenuous exercise I did, the stronger the fatigue and brain fog became
In context ↗ - Brain fog
the stronger the fatigue and brain fog became
In context ↗ - Pain & fibromyalgia
I spent the rest of that semester in great pain
In context ↗ - Anxiety & low mood
I dreamed of taking my own life but never got anywhere close to actually doing anything
In context ↗
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