ME/CFS for nine years, worst crash, now much better after rest and Unlearn Your Pain
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 9 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have ME/CFS, this is absolutely killing my system, I'm in a crash
In context ↗ - At worst: Moderate
being unable to work full time as well as a bunch of other limitations
In context ↗ - Now: Much better
I can feel really quite good if I limit my physical exertion
In context ↗ - Began after: stress or burnout
I come from a very abusive background, autism, constant extreme overwhelm ... I think this heavily contributed to my illness later on.
Read from 17 of their posts and comments; links to the 10 this page draws on
Summary
Tundra 93540 has had ME/CFS for about nine years, much of it undiagnosed and spent pushing through PEM, which worsened their symptoms. After learning about ME/CFS they improved with deliberate rest, meditation and nervous-system work. A toenail infection in January 2026 caused their worst crash; they have been recovering since surgery. Since reading Unlearn Your Pain they have improved fast and now get out on a mobility scooter.
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What they tried
What they credit
Also tried
Their words about each treatment
- exercising and pushing through the illness (out-training it) · Worse
Exercised through my illness for many years and that made it worse.
In context ↗ - nervous system regulation: meditations, coherence breathing, 4-7-8 breathing, body scans, polyvagal exercises and yin yoga · Helped
though a whole regime of meditation and whatnot. I've been making strides and leaps, including with regards to my MCAS. Within months I've noticed VERY real physiological changes and I'm hopeful now.
In context ↗ - limiting physical exertion and allowing the body to rest · Helped
I can feel really quite good if I limit my physical exertion
In context ↗ - EEG headband · Helped
2 months ago, I started using one of those EEG headbands, it shows some basic stuff like coherence and relaxation, and it was what changed it for me.
In context ↗ - antibiotic ointment · Worse
Bathe and use an antibiotic ointment. Did nothing, only got worse.
In context ↗ - small surgery for the infected toe (incisions, then removal of the whole nail) · Helped
After the nail was removed I could finally improve and recover somewhat.
In context ↗ - Unlearn Your Pain (with Breaking Free) · Helped
I'm improving, thanks to ''Unlearn Your Pain''. It's going very fast.
In context ↗
Approaches: Brain retraining · Mind-body practices · Pacing · 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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| about 2017 | ME/CFS begins; pushed through symptoms for yearsI was very much ill, but unsure what it was, and thought for the longest time that I should just ''force'' energy by being in excellent shape.In context ↗ | Mild | |
| — | collapsed in functioning after retraumatising work eventsI did collapse in functioningIn context ↗ | Moderate | |
| 2025 | improved a lot with nervous-system work and deliberate restI did improve a lot when I found out about ME/CFS and started doing nervous system workIn context ↗ | Moderate | Meditation, yoga, breathwork |
| January 2026 | severe crash from an infected toenailI had a severe, extreme crash as a result after I had already recovered a lot.In context ↗ | Severe | |
| 2026 | recovered somewhat after toenail surgeryAfter the nail was removed I could finally improve and recover somewhat.In context ↗ | Moderate | |
| October 2026 | improving fast with Unlearn Your PainI'm improving, thanks to ''Unlearn Your Pain''. It's going very fast.In context ↗ | Moderate | Sarno / TMS / somatic tracking / JournalSpeak |
| October 2026 | gets out more on a mobility scooterI've been spending a LOT more time outdoors this week because I got my mobility scooter!In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
forced myself through PEM and crashes
In context ↗ - Brain fog
Extremely swollen face, crushing fatigue, brain fog, all our favorite hits.
In context ↗ - Mast cell (MCAS) & allergies
I've been making strides and leaps, including with regards to my MCAS.
In context ↗ - Sleep problems
I also use polyvagal exercises when for instance I feel stressed, don't feel well, can't fall asleep
In context ↗ - Anxiety & low mood
stress/anxiety regulation, emotional regulation
In context ↗
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