ME/CFS with exercise worsening body for days, much better after pacing and rest
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Oct 2020
In their words
- Now: Much better
I'm probably 80% better now and studying a double degree at uni ... I'm only about 80% recovered and I still have to be very careful with my energy
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
Cedar 34918 described in 2018 being able to get to school most of the time but any exercise worsening their body for days. They credit pacing and rest, and getting sleep under control, for a slow improvement; about four years after diagnosis they began seeing noticeable improvement, with symptoms for at least a year before diagnosis. By October 2020 they rated themselves around 80% better, studying a double degree at university, though still careful not to trigger a relapse.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped a lot
Pacing and resting are probably the biggest things as always.
In context ↗ - getting my sleep under control · Helped
Getting my sleep under control helped me maximise my "usable" time
In context ↗ - various drugs · Not said
I was on various drugs but they were more for managing the symptoms than curing the illness.
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 2.6 years 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 |
|---|---|---|---|
| 2018-12-06 | able to get to school most of the timeI can get to school most of the time and operate on a mildly normal level nowIn context ↗ | Mild | Pacing and the energy envelope |
| about December 2019 | noticeable improvement beganIt's been about 10 months since I started seeing improvement.In context ↗ | Not stated | Pacing and the energy envelope |
| 2020-10-08 | about 80% better, studying a double degree at universityI'm probably 80% better now and studying a double degree at uniIn context ↗ | Mild | Pacing and the energy envelope |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
any kind of exercise completely fucks up my body for days
In context ↗ - Brain fog
The brain fog was probably the worst symptom for me
In context ↗ - Sleep problems
Getting my sleep under control helped me maximise my "usable" time
In context ↗
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