ME/CFS
Severe → no benefitIll for 4.5 years
ME/CFS with extreme fatigue and pain, now far below baseline and nothing helped
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 4.5 years
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
my pain specialist is not well knowledgeable on LongCovid/Mono/Mecfs and illnesses that stem from viral infections
In context ↗ - At worst: Severe
I’ve been way below my baseline ever since. Nothing helps anymore. ... I can’t do anything anymore.
In context ↗ - Now: No benefit
Then Covid hit me a few months later and things got worse. ... I’ve been way below my baseline ever since.
In context ↗ - Began after: glandular fever or EBV
Back in 2021 I was hospitalised for mono.
Read from 1 of their posts and comments; links to the one this page draws on
Summary
The user fell ill in 2021 after being hospitalised for mono, with extreme fatigue, joint, muscle and nerve pain, migraines and constant flu-like symptoms; COVID a few months later and again in 2023 made things worse. A 2022 fibromyalgia diagnosis was doubted by a pain specialist, and the GP dismissed the worsening fatigue. After a severe crash in October they were far below baseline and said nothing helped; ill four to five years.
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What they tried
Also tried
lidocaine infusions· Not saidpain medication· Not said
Their words about each treatment
- lidocaine infusions · Not said
I do lidocaine infusions once a week on top of pain medication.
In context ↗
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. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2021 | hospitalised for mono; joint and muscle pain worsened, could not work outBack in 2021 I was hospitalised for mono. And that is when my joint pain and muscle soreness got worseIn context ↗ | Mild |
| a few months after 2021 | COVID infection made everything worseThen Covid hit me a few months later and things got worse.In context ↗ | Not stated |
| 2023 | second COVID infection; migraines never went awayIn 2023 I had Covid again. The migraines that started with the infection never went away.In context ↗ | Not stated |
| October 2025 | one of the worst crashes ever; lost a lot of weight and fell far below baselineI’ve recently lost a ton of weight from one of the worst crashes I’ve ever had back in October. I’ve been way below my baseline ever since.In context ↗ | Severe |
| 2026-01 | still far below baseline; nothing helpsI’ve been way below my baseline ever since. Nothing helps anymore.In context ↗ | Severe |
Symptoms mentioned
Flu-like symptomsHeadaches & migraineNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Pain & fibromyalgia
muscle,joint and nerve pain
In context ↗ - Headaches & migraine
migraines and headaches
In context ↗ - Flu-like symptoms
constant flu like symptoms
In context ↗ - Post-exertional malaise
my symptoms worsening not long after physical activities
In context ↗ - Sleep problems
I needed more than 10h of sleep
In context ↗