ME/CFS
Very severe → no benefit
Bedbound with ME/CFS after graded exercise therapy, no improvement
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- Not stated
- Last post
- Aug 2020
In their words
- Condition: ME/CFS
my CFS and cognitive abilities has also getting worse and worse
In context ↗ - At worst: Very severe
Thr fact that my survival is dependent on other people ... Now I am bedbound!!
- Now: No benefit
lately its been more frequent and my CFS and cognitive abilities has also getting worse and worse
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
Alder 29776 had CFS and was once able to live alone and go to the store, but became bedbound after graded exercise therapy, which they blamed for their deterioration. By mid-2020 they were too ill to sit upright, tolerate light or sound, or travel to a doctor, with nerve pain triggered by exertion and excruciating pain all the time. They were in a facility, said painkillers made them worse, and reported no treatment available in their country.
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What they tried
Also tried
Their words about each treatment
- rest · Not said
I just have to rest until its over. nothing else helps.
In context ↗ - pain killers · Worse
cannot even take pain killers because they make me worse
In context ↗ - graded exercise (GET) · Much worse
Before i started GET i was able to live alone, go to the store by myself. Now I am bedbound!!
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | Ill with CFS but able to live alone and go outBefore i started GET i was able to live alone, go to the store by myself.In context ↗ | Mild | |
| — | Became bedbound after graded exercise therapyGraded exercise was literally the main reason why i ended up in this state in the first place. ... Now I am bedbound!!In context ↗ | Very severe | Graded exercise therapy (GET) |
| 2020-07-15 | Too ill to sit upright, tolerate light or sound, or travel to a doctorunfortunately now i'm too ill to travel to see the doctor, I cant even sit upright or tolerate any sound/light.In context ↗ | Very severe | |
| 2020-08-13 | In a care facility, dependent on others, in constant painI'm trapped in a broken body in this shithole facility, I'm in excruciating pain all the time and cannot even take pain killers because they make me worse .In context ↗ | Very severe |
Adverse events
- “cannot even take pain killers because they make me worse” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“Graded exercise was literally the main reason why i ended up in this state” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogLight & noise sensitivityNeuropathy & tinglingPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
Every time i over exert myself i get this burning pain, tingling and numbness in my mid back.
In context ↗ - Neuropathy & tingling
It's trggered mostly by **cognitive** exertion ... Imo it feels just like nerve pain.
- Brain fog
my CFS and cognitive abilities has also getting worse and worse
In context ↗ - Light & noise sensitivity
I cant even sit upright or tolerate any sound/light.
In context ↗ - Temperature regulation
I start to feel like i have 40C fever and i get the burning pain in my back
In context ↗