Unable to get off the couch unaided with ME/CFS, now much better after rest and surgery
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6.5 years
- Last post
- Mar 2019
In their words
- Condition: ME/CFS
My mother actually diagnosed me with chronic fatigue first, probably a year before the doctor.
In context ↗ - At worst: Severe
I am able to get off the couch by myself these days, something I couldn't do before.
In context ↗ - Now: Much better
I've managed to get better! I'm not back to full health but I am able to get off the couch by myself these days, something I couldn't do before.
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Wave 69289 became ill with CFS around 2012 and was diagnosed after tests for everything else came back negative. At their worst they could not get off the couch unaided. Years of rest, plus surgery to remove endometriosis and treatment for a chronic bladder condition, lessened the CFS; by early 2019 they could walk the dog 2-3 miles daily but were not back to full health. Graded exercise made them crash harder.
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What they tried
What they credit
Also tried
Their words about each treatment
- GET · Much worse
The only thing it was good for was making me crash harder.
In context ↗ - rest · Helped
It did take many years of rest
In context ↗ - surgery · Helped a lot
I also had endometriosis diagnosed and removed which helped me a lot.
In context ↗ - treating my bladder · Helped
treating my bladder means my CFS has lessened in severity
In context ↗
Approaches: Radical rest · Surgery & structural
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 first step with a time is 6.6 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 | After |
|---|---|---|---|
| 2012 | fatigue began, diagnosed after all tests came back negativeThe fatigue has been with me for close to six years nowIn context ↗ | Not stated | |
| — | crashed harder after graded exercise therapyThe only thing it was good for was making me crash harder.In context ↗ | Not stated | |
| — | lying on the couch, unable to get up unaidedI am able to get off the couch by myself these days, something I couldn't do before.In context ↗ | Severe | |
| 2019-02-14 | able to walk the dog daily, though not back to full healthI can even take my dog for 2-3 mile walks every day.In context ↗ | Mild | Other surgery (adrenal, lung, venoplasty) |
| 2019-03-01 | CFS lessened in severity after endometriosis and bladder treatmentfixing the Endo as well as treating my bladder means my CFS has lessened in severityIn context ↗ | Mild |
Adverse events
- Graded exercise therapy (GET)“The only thing it was good for was making me crash harder. ... it made me feel monumentally worse” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
The only thing it was good for was making me crash harder.
In context ↗ - Gut problems
Getting the endometriosis removed meant I stopped experiencing IBS style issues
In context ↗ - Muscle weakness
I am able to get off the couch by myself these days, something I couldn't do before.
In context ↗
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