ME/CFS
Severe → relapsedIll 40 years before improving or writing
ME/CFS improved, then relapsed to exhaustion and mostly resting
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 40 years
- Last post
- May 2022
In their words
- Condition: ME/CFS
I was diagnosed with Chronic Fatigue.
In context ↗ - At worst: Severe
I came out of that surgery unable to even stand for more than a couple minutes.
In context ↗ - Now: Relapsed
I managed to work out of it (it took years), but towards my fifties I began to tire more and more.
In context ↗ - Began after: glandular fever or EBV
In my 30’s I had a very bad bout of Epstein-Barr/ mono and was hospitalized.
Summary
Kestrel 44204 had a severe bout of Epstein-Barr/mono in their thirties, was hospitalised and diagnosed with chronic fatigue, and took years to work out of it. From their fifties came progressive tiring; after cancer surgery and a colostomy there was exhaustion and an inability to stand for more than a couple of minutes. In their seventies their days were largely spent resting, and they quit garden volunteering because it wasn't working; physical work left them drained and unable to sleep.
Ask Miruvor AI
What they tried
Their words about each treatment
- working through it by volunteering at a garden · Worse
I tried to work physically and I wind up, not getting stronger, but just draggy, drained, and unable to sleep.
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 my 30's | very bad bout of Epstein-Barr/mono, hospitalised, diagnosed with chronic fatigueIn my 30’s I had a very bad bout of Epstein-Barr/ mono and was hospitalized. I was diagnosed with Chronic Fatigue.In context ↗ | Severe |
| after that, over years | worked out of the illness over yearsI managed to work out of it (it took years)In context ↗ | Near normal |
| my fifties | began to tire more and moretowards my fifties I began to tire more and moreIn context ↗ | Mild |
| three years before 2022 | cancer surgery with colostomy; could not stand more than a couple of minutesI came out of that surgery unable to even stand for more than a couple minutes.In context ↗ | Severe |
| 2022-05-31 | exhausted, resting between short activitiesI get up at 7, go back to bed until mid morning, make lunch, walk outside, take a nap.In context ↗ | Moderate |
Adverse events
- “I came out of that surgery unable to even stand for more than a couple minutes.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I tried to work physically and I wind up, not getting stronger, but just draggy, drained, and unable to sleep.
In context ↗ - Sleep problems
I get up at 7, go back to bed until mid morning, make lunch, walk outside, take a nap.
In context ↗ - Temperature regulation
I have this thing where I sweat a lot, abnormally a lot.
In context ↗