ME/CFS: improved with physio and pacing, then relapsed and became largely bed-bound
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6 years
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
I've been diagnosed with ME//CFS about 5-6 years ago.
In context ↗ - At worst: Severe
I'm basically bed/couch ridden and can only do small things once every few days, then crash and repeat.
In context ↗ - Now: Relapsed
I've been doing quite well for the past few years, with more energy to spare. ... I've now been in recovery for over a month and still am not where I used to be, by far.
In context ↗ - Began after: nothing they could name
Doctors couldn't figure out what was wrong with me
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
They were diagnosed with ME/CFS six years ago, after being exhausted and immobilised for about a year with repeated PEM attacks. Physiotherapy, CBT and a phased return to part-time work helped, and lighter hours with pacing kept them stable for around six months. In 2026 a holiday, a car trip and extra work triggered their deepest crash, leaving them largely bed-bound; pacing and yoga nidra brought it partly under control.
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What they tried
What they credit
Also tried
Their words about each treatment
- Fysio · Not said
They sent me to do Fysio and CBT and I finished all that over the next year.
In context ↗ - Pacing · Helped
I pace myself. I set alarms and timers.
In context ↗ - Rest · Helped
Its boring, you feel shit and guilty, but its the only thing that helps.
In context ↗ - Flow Breath app · Not said
I used the Flow Breath app before, it has a nice visual to help you breath slow.
In context ↗ - progressive muscle relaxation · Helped
This really helps me if I can't actively relax my body if I am stressed.
In context ↗ - birth control implant · Not said
Went back on and after 3 years I am worse again.
In context ↗ - yoga nidra · Helped
Yoga nidra is really helping me right now to get my really bad set back somewhat under control.
In context ↗
Approaches: Mind-body practices · Pacing
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 | After |
|---|---|---|---|
| 2020 | ME/CFS onset: exhausted and immobilized for about a yearI was exhausted and immobilized for about a year, experiencing PEM attacks on and off.In context ↗ | Severe | |
| 2021-2022 | physio and CBT, work reintegration, switched to part-time job they loved, partly from homeI did a reintegration track for work, switched my fulltime job to part time, doing something I love, partially from home.In context ↗ | Mild | CBT and psychotherapy |
| 2024 | job ended, forced into retail work, repeated PEM and then herpes zosterI started working even less hours after PEM struck me too many times and my immune system went that low, I got herpes zester.In context ↗ | Moderate | |
| 2025 | stable for about six months on reduced hours with lots of pacingI managed to make it work with those lessened hours with lots of pacing. ... I did fine for about 6 months.In context ↗ | Mild | Pacing and the energy envelope |
| 2026-05 | crashed after a week with a chatty friend and a multi-city car tripI went on holiday and spent almost a week with a very dear but very chatty friend of mine, I went straight through all my red lightsIn context ↗ | Moderate | |
| 2026-06-20 | deepest crash after extra work and a big event: floored, dizzy, nauseated, nightly PEMNow I've been completely floored for over two weeks, I was extremely dizzy and nauseated most of the time, something that's new for me.In context ↗ | Severe | |
| 2026-07-25 | still mostly bed- and couch-bound, yoga nidra helping to bring the setback under controlYoga nidra is really helping me right now to get my really bad set back somewhat under control.In context ↗ | Severe | Meditation, yoga, breathwork |
Adverse events
- Progestin-only birth control (mini pill, implant or shot)“Went back on and after 3 years I am worse again.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I was exhausted and immobilized for about a year, experiencing PEM attacks on and off.
In context ↗ - POTS & dysautonomia
I've had severe PEM attacks every night where I get so sick and dizzy, everything starts spinning and I need to get out of bed.
In context ↗ - Brain fog
I can't go to the grocery store or any store without experiencing irritation, overstimulation, nausea, brain fog and dizziness.
In context ↗ - Gut problems
I was extremely dizzy and nauseated most of the time, something that's new for me.
In context ↗ - Sleep problems
Sleepless nights, obviously. I'm exhausted, but I am not that tired or sleepy to actually go to bed or sleep.
In context ↗ - Flu-like symptoms
Also I have swollen lymphs
In context ↗ - Pain & fibromyalgia
Yes, aching muscle, hurting joints, headaches and my nerve pain (from a previous infection) and glands flare up.
In context ↗ - Headaches & migraine
aching muscle, hurting joints, headaches
In context ↗ - Neuropathy & tingling
my nerve pain (from a previous infection)
In context ↗ - Light & noise sensitivity
Going outside is the worst, I can't go to the grocery store or any store without experiencing irritation, overstimulation
In context ↗ - Muscle weakness
I was exhausted and immobilized for about a year
In context ↗
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