ME/CFS
Somewhat better
Severe ME/CFS, once in a dark quiet room 24/7, now somewhat better
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- Dec 2021
In their words
- Condition: ME/CFS
My doctor said it was CFS
In context ↗ - Now: Somewhat better
I have improved from being in the dark and quiet room 24/7, I don’t seem to be improving beyond that.
In context ↗
Read from 11 of their posts and comments; links to the 6 this page draws on
Summary
A Reddit user with severe CFS had been in a dark, quiet room 24/7 and later improved enough to leave it but not beyond that. In CBT and occupational therapy, they felt pushed to do more, and they crashed after therapy and after a PIP assessment. They reported constant pain, trouble staying warm and burns from hot water bottles, and said medication and painkillers did not help.
Ask Miruvor AI
What they tried
Also tried
medication· No changepainkillers· No changegroup CBT· Worseslowly adding more simple things· Worseretrain my brain and nervous system / morning routine· Not said
Their words about each treatment
- group CBT · Worse
I’ve definitely been getting worse doing CBT also!
In context ↗ - slowly adding more simple things · Worse
When I try and do what he asks, I get so many symptoms and medication doesn’t help, resulting back to a quiet dark room.
In context ↗ - retrain my brain and nervous system / morning routine · Not said
He’s just told me I need to ‘retrain my brain and nervous system’ ... Regardless I REALLY struggle with the morning routine
In context ↗ - medication · No change
I get so many symptoms and medication doesn’t help
In context ↗ - painkillers · No change
I’m in pain all the time too and painkillers don’t work.
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 |
|---|---|---|
| — | in a dark, quiet room 24/7I have improved from being in the dark and quiet room 24/7In context ↗ | Severe |
| 2021-12-14 | crashed after a PIP assessmentI missed my session today because I had a PIP assessment and crashed afterwardsIn context ↗ | Severe |
| 2021-12-21 | out of the dark room but no further improvementWhile I recognise I have improved from being in the dark and quiet room 24/7, I don’t seem to be improving beyond that.In context ↗ | Severe |
| 2021-12-21 | four-hour crash after therapyI’ve just woken up from a 4 hour crash after therapyIn context ↗ | Severe |
| 2021-12-29 | still severe, in constant painI’m basically in the same position as you.In context ↗ | Severe |
Adverse events
- Graded rehab and self-made programmes“When I try and do what he asks, I get so many symptoms and medication doesn’t help, resulting back to a quiet dark room.” In context ↗ Made symptoms worse
- CBT and psychotherapy“I’ve definitely been getting worse doing CBT also!” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodLight & noise sensitivityPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
When I try and do what he asks, I get so many symptoms and medication doesn’t help, resulting back to a quiet dark room.
In context ↗ - Light & noise sensitivity
resulting back to a quiet dark room
In context ↗ - Temperature regulation
I’m currently in cannot ever warm up state
In context ↗ - Pain & fibromyalgia
I’m in pain all the time too and painkillers don’t work.
In context ↗ - Anxiety & low mood
As much as I would consider ending it all, I’ve done it before
In context ↗