ME/CFS
Outcome unclear
ME/CFS with fever, fog and light/sound sensitivity, more moderate now; meds no help
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Feb 2025
In their words
- Condition: ME/CFS
Didn't take them for my ME/CFS tho, but my anxiety.
In context ↗ - At worst: Moderate
I'm more moderate these days
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
On ME/CFS forums they describe themselves as 'more moderate these days', playing video games with pacing and resting when they turn flushed, feverish, foggy and light- and sound-sensitive. Years earlier a medication for depression did nothing and triggered a seizure, medication for anxiety left them extremely groggy, and a medication for chronic fatigue and daytime sleepiness did nothing, as did several stimulants.
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What they tried
Their words about each treatment
- Wellbutrin · Worse
I was prescribed it years ago for my depression, but it never helped. And it actually triggered a seizure.
In context ↗ - benzos · Worse
Didn't take them for my ME/CFS tho, but my anxiety. They actually made me REALLY groggy
In context ↗ - Ritalin and other stimulants · No change
It didn't work for me. ... They tried me on several stimulants, but none of them did anything.
In context ↗ - pacing · Not said
I have to pace myself tho, and not play for too long.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| onset | ME/CFS; onset not describedthey thought that I had a possible sleep disorder such as narcolepsyIn context ↗ | Not stated |
| 2025-01-28 | more moderate than before, games with pacingI'm more moderate these days, and I do. I have to pace myself thoIn context ↗ | Moderate |
Adverse events
- Bupropion (Wellbutrin)“And it actually triggered a seizure.” In context ↗ Side effects
- Benzodiazepines (unspecified)“They actually made me REALLY groggy, I mean, more so than normal, which made it even more difficult to function” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogLight & noise sensitivityPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Pain & fibromyalgia
Gaming really helps me take the mind off of the pain I'm in
In context ↗ - Post-exertional malaise
I can usually tell when it's been too much and I need to go rest and lay down for awhile
In context ↗ - Brain fog
brain fog starts to set in
In context ↗ - Light & noise sensitivity
I develop an increased sensitivity to light and sound
In context ↗ - Temperature regulation
I tend to get flushed and feverish
In context ↗ - Sleep problems
It was supposed to help me deal with my chronic fatigue and daytime sleepiness
In context ↗ - Anxiety & low mood
Didn't take them for my ME/CFS tho, but my anxiety
In context ↗