ME/CFS fatigue, numbness and breathlessness, some improvement then relapse
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 4 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
It’s been just over a year since I last commented about my experience with CFS.
In context ↗ - Now: Relapsed
was even living life doing uni but was just pushing through horrific exhaustion now I'm on the severe end
In context ↗ - Began after: COVID
2 years since i got covid
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Swan 50792 became ill with long COVID after a COVID infection in 2022, with chronic fatigue, numbness, breathlessness and constant illness, which doctors were unsure whether to call long COVID or CFS. After partly improving enough to return to some university lectures, they stopped pacing and worsened from mild to severe, which they blamed on a brain retraining appointment their family booked, later describing themselves as on the severe end with a hyperadrenergic state. In October 2025 they reported brain fog and exhaustion lifting while numbness and altered perception persisted, and in May 2026 said their body was "on a whole 180" and awful.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
I stupidly stopped pacing as I thought I was getting out of this turns out I shoved myself into the hyperarowsal state of this
In context ↗ - retraining · Much worse
I got worse because of one of those stupid retraining idiots my family booked an appointment with them and all of a sudden I went from mild to severe in a year
In context ↗ - addressing potential vitamin problems · Not said
I've tried addressing potential vitamin problems basically being laughed at by doctors
In context ↗
Approaches: 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. The chart starts 2.1 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2022 | COVID infection; illness developed slowly afterwardsits been developing slowly for 2 years since i got covid but has been the worst since 3 months agoIn context ↗ | Not stated |
| 2024-08-29 | worsening over the previous three months, run down despite pacinghas been the worst since 3 months agoIn context ↗ | Moderate |
| 2024-10-14 | able to get back to some university lecturesI've been to lectures in 2 weeks and am starting to go back nowIn context ↗ | Moderate |
| 2025-10-27 | brain fog and exhaustion lifted; back to some life outside, but crashes if pushingI’ve managed to get back to living a bit of my life outsideIn context ↗ | Mild |
| 2026-02-08 | went from mild to severe after a brain retraining appointment booked by familyI got worse because of one of those stupid retraining idiots my family booked an appointment with them and all of a sudden I went from mild to severe in a yearIn context ↗ | Severe |
| 2026-05-27 | still severely affected; body on a whole 180I've tried my body seems to just be on a whole 180 it's awfulIn context ↗ | Severe |
Adverse events
- “It worked for a few weeks and I was back to square one my body started rejecting them” In context ↗ Side effects
- Brain retraining programs (DNRS, Gupta, ANS Rewire, Primal Trust)“I got worse because of one of those stupid retraining idiots my family booked an appointment with them and all of a sudden I went from mild to severe in a year” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if I push myself physically, I feel awful almost like I’m bedbound again
In context ↗ - Neuropathy & tingling
the neurological symptoms like numbness and altered perception are still present
In context ↗ - Breathlessness
the most crippling part along with breathing problems
In context ↗ - Flu-like symptoms
the constant illness is the most crippling part
In context ↗
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