ME/CFS
Severe → no benefitIll for 3 years
Bedbound after active days with ME/CFS, no benefit from treatments tried
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 3 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
my ME/CFS symptoms didn't become clear until after I agitated my body majorly with physical therapy
In context ↗ - At worst: Severe
some severe fatigue that keeps me bedbound after active days, post infection
In context ↗ - Now: No benefit
I've been tired after a day out and about or intense exercise but never anything like what I deal with now
In context ↗ - Began after: COVID
aside from fresh after the covid infection for a few months when I thought I was experiencing autistic burnout
Read from 10 of their posts and comments; links to the 9 this page draws on
Summary
Alder 99322 traced their ME/CFS to a COVID infection, starting with mild fatigue and concentration problems. Physical therapy triggered a severe delayed crash and made ME/CFS clear, with POTS, dysautonomia and PEM that left them bedbound after active days. Strattera, 15-minute pacing, B12 and fish oil eased fatigue and thinking somewhat, but a 2026 flare brought POTS, nausea and trouble eating. No recovery was reported.
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What they tried
Also tried
pink tinted glasses· Helpedmeditation· Helpedhydroxyzine / allergy meds· HelpedStrattera/Atomoxetine· Helpedvitamin b12 supplements· Helpedfish oil· HelpedChatGPT· Helpedorange and red lighting· Helpedphysical therapy· Much worsesleep medication· Not saidpacing· Not saidSSRI· Not said
Their words about each treatment
- pink tinted glasses · Helped
I got basically the same pair and also with a pink tint ... I feel like its really helped with my migraines personally!
In context ↗ - meditation · Helped
I started meditating and that made it a lot easier to kind of just zone out when needed.
In context ↗ - hydroxyzine / allergy meds · Helped
Either a full dose of my hydroxyzine or an allergy med that makes me really sleepy instead of my usual every four hour ones.
In context ↗ - sleep medication · Not said
Antihistamines preferred over my actual sleep medication since it's far more gentle.
In context ↗ - Strattera/Atomoxetine · Helped
It's helped with my fatigue but as a side effect of not just helping me initiate tasks, but also stop them
In context ↗ - pacing · Not said
I've really only just started to get serious about pacing, but now I'm being much more strict to try and balance things out. 15 minute session blocks tops.
In context ↗ - physical therapy · Much worse
I started physical therapy over a separate issue ... roughly 24 hours I woke up and my body felt like a brick.
In context ↗ - vitamin b12 supplements · Helped
I had a vitamin b12 deficiency and while supplements haven't cured me, they did help.
In context ↗ - fish oil · Helped
Fish oil has also seemed to help with cognitive issues.
In context ↗ - SSRI · Not said
I've also been on an SSRI so idk if that could have impacted my tolerance at all
In context ↗ - ChatGPT · Helped
Gave ChatGPT like three suggestions to generate similar ideas, explained my limits, and I didn't have to worry about it anymore.
In context ↗ - orange and red lighting · Helped
I find orange better for day-to-day use because it's more soothing psychologically and I find it better for the eyes
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 |
|---|---|---|---|
| onset | COVID infection; tiredness and concentration problems brushed off as autistic burnoutit was literally just like feeling a bit more tired, having a harder time concentrating and needing more breaksIn context ↗ | Mild | |
| — | crashed a day after light physical therapy for a separate issue; ME/CFS became clearI started physical therapy over a separate issue ... roughly 24 hours I woke up and my body felt like a brickIn context ↗ | Severe | |
| 2024-05-30 | bedbound after active days with significantly worsened dysautonomiasome severe fatigue that keeps me bedbound after active daysIn context ↗ | Moderate | |
| 2025-04-17 | began strict pacing in 15-minute blocks and restarted Strattera; fatigue easedI've really only just started to get serious about pacing ... It's helped with my fatigue | Moderate | Pacing and the energy envelope |
| 2026-08-11 | severe flare with flaring POTS, nausea and hard to eat or thinkI had a period with a severe flare, POTS was flaring up and making me nauseous tooIn context ↗ | Severe | |
| 2026-09-10 | still pacing; crashing a day after outingssuddenly your body feels like molasses about 14-24 hours laterIn context ↗ | Moderate |
Adverse events
- Atomoxetine (Strattera)“I started taking it again more recently, and I lost a little rest because I'll usually have a really dry mouth for a month or so.” In context ↗ Side effects
- Atomoxetine (Strattera)“Those symptoms sound like what I'm going through now and what I went through with Strattera originally. ... things like increased heartrate or dehydration or dizziness add strain to the body so it's definitely not pleasant while you're adjusting” In context ↗ Side effects
- Physical therapy / physiotherapy“roughly 24 hours I woke up and my body felt like a brick. I could barely move, and I couldn't say anything, much less call out for help.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogGut problemsHeadaches & migraineLight & noise sensitivityPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
roughly 24 hours I woke up and my body felt like a brick
In context ↗ - POTS & dysautonomia
significantly worsened dysautonomia
In context ↗ - Brain fog
having a harder time concentrating and needing more breaks
In context ↗ - Headaches & migraine
I feel like its really helped with my migraines personally!
In context ↗ - Gut problems
POTS was flaring up and making me nauseous too
In context ↗ - Sleep problems
Antihistamines preferred over my actual sleep medication since it's far more gentle.
In context ↗ - Light & noise sensitivity
with texture and sensory issues that were getting worse
In context ↗