ME/CFS
Moderate → no benefit
Mostly housebound after a major crash, still lower end of moderate ME/CFS
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
the brainfog we experience with POTS (and ME/cfs)
In context ↗ - At worst: Moderate
I'm 24 and mostly housebound now.
In context ↗ - Now: No benefit
I'm barely healthy rn. ... On the lower end of moderate severity wise.
In context ↗ - Began after: glandular fever or EBV
it was written that I had had a mono more than six months ago which would explain the always tired thingy
Read from 12 of their posts and comments; links to the 9 this page draws on
Summary
They fell ill after two years of gradual decline and a glandular fever; a graded exercise programme in 2017 cut their baseline from mild to moderate. A major crash in 2018, which they never really recovered from, left them mostly housebound. Pacing with a heart rate monitor, ear defenders, cold showers, extra water and salt helped manage symptoms, but they stayed at the lower end of moderate severity.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- GET program · Much worse
ramping up from 5 minutes of bike to 45 over 13 weeks ... it did mid term is significantly reducing my baseline, going from mild to moderate in a year
In context ↗ - Pacing with a heart rate monitor · Helped
Pacing with a heart rate monitor ... I'm really good at not crashing physically anymore
- Cold showers · Helped
That made a significant QoL difference for me ... one of the only thing that really helps regarding PEM symptoms for me
- drinking more water, adding salt to my diet · Helped
just drinking more water, adding salt to my diet and taking cold showers have helped noticeably
In context ↗ - yeast free/sugar free diet · No change
I stopped the yeast free/sugar free diet I was on (for seemingly zero benefits)
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. 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 |
|---|---|---|---|
| 2014 | main crash after two years of gradual decline; mono found on blood testOn my first blood test after the fatigue exploded it was written that I had had a mono more than six months agoIn context ↗ | Mild | |
| a few months after the first crash | felt a bit better and kept working and studyingI was feeling a bit better a few months after that crash, still trying to keep working and studyingIn context ↗ | Mild | |
| — | second major crash, never fully recoveredBut it lead me to another major crash which I never really recovered fromIn context ↗ | Moderate | |
| 2017 | GET-like programme ramped cycling from 5 to 45 minutes and lowered his baselinethe only thing it did mid term is significantly reducing my baseline, going from mild to moderate in a yearIn context ↗ | Moderate | |
| May 2018 | crashed after his best friend's wedding and a second ceremony a month later; missed his examsI thought I was felling better two weeks after but it seems like the second time screwed me, I just can't get my energy levels from back then back.In context ↗ | Moderate | |
| February 2023 | more water, added salt and cold showers helped noticeablyjust drinking more water, adding salt to my diet and taking cold showers have helped noticeablyIn context ↗ | Moderate | Salt, electrolytes and fluids |
| January 2024 | pacing with a heart rate monitor, ear defenders and cold showers made a big differenceCold showers (very likely due to POTS)In context ↗ | Moderate | Pacing and the energy envelope |
Adverse events
- Graded exercise therapy (GET)“I also did a GET-like program ... significantly reducing my baseline, going from mild to moderate in a year.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogLight & noise sensitivityPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
If you push yourself, you crash, it's as simple as that, and is the main symptom of cfs.
In context ↗ - Brain fog
thinking acting on my POTS wasn't really useful as my issues were a lot more cognitive than physical
In context ↗ - POTS & dysautonomia
thinking acting on my POTS wasn't really useful
In context ↗ - Sleep problems
I wake up around 12am to 2-3pm, try to pace/sleep again somewhere around 6-7pm
In context ↗ - Light & noise sensitivity
personally sound is a huge part of the energy consumption
In context ↗ - Temperature regulation
as I'm always cold in the winter
In context ↗