ME/CFS
Severe → no benefit
Mostly in bed with ME/CFS, no clear improvement despite FL-41 glasses and green light
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- years
- Last post
- May 2021
In their words
- Condition: ME/CFS
i still think it’s ME and i really really really wish i didn’t. but i have all the symptoms. i have PEM.
In context ↗ - At worst: Severe
i’ve been stuck at home, mostly in bed, ever since, trying to understand what happened.
In context ↗ - Now: No benefit
every day i don’t get better is making the odds i ever go back to work more remote
In context ↗ - Began after: nothing they could name
i had a mild case for years until a month ago
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
They had a mild ME/CFS-like illness for years and kept a job, until a week of pushing past their limits and a stressful day of air travel in early 2021 left them mostly in bed, able to do almost nothing. Talking with a partner triggered a crash, and a doctor dismissed their suspicion of ME/CFS. FL-41 glasses and green light helped light sensitivity; by mid-2021 they were on medical leave with no clear improvement.
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What they tried
Also tried
Their words about each treatment
- forced myself to exercise through the fatigue and stick to incredibly strict routines · Worse
because i have forced myself to exercise through the fatigue and stick to incredibly strict routines. for years. it just makes me crash, every time.
In context ↗ - fl-41 migraine glasses · Helped
got fl-41 migraine glasses and started using more green lighting, both help
In context ↗ - green lighting · Helped
started using more green lighting, both help
In context ↗ - pacing · Helped
now i’m staying in my limits and in many ways that’s more comfortable than constantly pushing
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 |
|---|---|---|
| years before 2021 | mild case for years, kept a jobi had a mild case for years until a month ago. that was a struggle, but i kept a job somehowIn context ↗ | Mild |
| April 2021 | broke after a week of overexertion and a stressful day of air travela month ago i had an incredibly stressful day of air travel after a week of pushing myself physically past my limits and i just brokeIn context ↗ | Severe |
| 2021-05-14 | on medical leave, no betteri’m on medical leave right now after a big crash a couple months ago but every day i don’t get better is making the odds i ever go back to work more remoteIn context ↗ | Severe |
Adverse events
- Everyday exercise and activity“i have forced myself to exercise through the fatigue and stick to incredibly strict routines. for years. it just makes me crash, every time.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogLight & noise sensitivityPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
so obviously a couple of hours later PEM struck
In context ↗ - Brain fog
all my usual pain and brain fog and lack of energy
In context ↗ - Sleep problems
i got maybe an hour of sleep and can’t get back to it
In context ↗ - Light & noise sensitivity
i also have moderate photophobia a lot of the time
In context ↗ - Anxiety & low mood
i had started to feel very depressed and being with her cheered me up so much
In context ↗