ME/CFS
Moderate → no benefit
Moderate ME/CFS and mostly housebound, no benefit from off-label dex
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I had undiagnosed mild ME when I had my hysterectomy in 2021
In context ↗ - At worst: Moderate
I’m moderate and mostly housebound.
In context ↗ - Now: No benefit
I’m moderate and mostly housebound.
In context ↗
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
Had undiagnosed mild ME by 2021, when a hysterectomy for pelvic pain and gender dysphoria worsened ME symptoms during a long recovery; fatigue eased slightly afterwards and after stopping opioids. Dex prescribed off-label for fatigue was partly behind rolling PEM, worsening POTS symptoms and hard end-of-day crashes. By August 2026 they called themselves moderate and mostly housebound, with collarbone symptoms a day after outings or mental effort.
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What they tried
Also tried
hysterectomy· Helpedopioids· Helpedapplying gentle pressure with my hands· Helpedseroquel· Worseanother antipsychotic med· Worsedex· Worsesodium valproate· Not said
Their words about each treatment
- seroquel · Worse
I was on seroquel, and another antipsychotic med, for several years and the fatigue was crushing.
In context ↗ - sodium valproate · Not said
I was also on sodium valproate at the time
In context ↗ - dex · Worse
I’ve found myself in rolling PEM partly due to dex. Prescribed off label for fatigue
In context ↗ - hysterectomy · Helped
I had undiagnosed mild ME when I had my hysterectomy in 2021 and had a slight improvement in fatigue after recovery.
In context ↗ - opioids · Helped
I was also on opioids prior to surgery and stopped after recovery, so that probably also helped with fatigue.
In context ↗ - applying gentle pressure with my hands · Helped
Only thing that helps me is applying gentle pressure with my hands
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | undiagnosed mild ME before a 2021 hysterectomyI had undiagnosed mild ME when I had my hysterectomy in 2021In context ↗ | Mild | |
| 2021 | hysterectomy and stopping opioids; long recovery, then slightly better fatiguehad a slight improvement in fatigue after recovery ... I was also on opioids prior to surgery and stopped after recoveryIn context ↗ | Mild | Other surgery (adrenal, lung, venoplasty) |
| 2026-05 | rolling PEM, worse POTS and hard crashes from off-label dexamphetamineI’ve found myself in rolling PEM partly due to dex ... Think it’s making my POTS symptoms worse tooIn context ↗ | Not stated | |
| 2026-08-11 | moderate and mostly housebound; collarbone symptoms a day after outings or mental effortI’m moderate and mostly housebound. Find it happens a day or so after I leave the house or do something cognitively engaging.In context ↗ | Moderate |
Adverse events
- Quetiapine (Seroquel)“I was on seroquel, and another antipsychotic med, for several years and the fatigue was crushing.” In context ↗ Side effects
- Quetiapine (Seroquel)“I once accidentally took it in the morning as I misread my pill box and had to cancel all plans for the day and sleep it off.” In context ↗ Side effects
- Quetiapine (Seroquel)“Oh yeah, I couldn’t handle the fatigue from XR.” In context ↗ Side effects
- Dexamfetamine (Dexedrine)“I’ve found myself in rolling PEM partly due to dex. ... I end up doing more than my body is capable of and the cycle repeats.” In context ↗ Made symptoms worse
- Dexamfetamine (Dexedrine)“Think it’s making my POTS symptoms worse too. End up crashing hard at the end of the day when it wears off” In context ↗ Made symptoms worse
- Other surgery (adrenal, lung, venoplasty)“Recovery was really challenging and took longer than I expected. From memory, think my ME related symptoms were worse during this time but then settled down.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I’ve found myself in rolling PEM partly due to dex
In context ↗ - POTS & dysautonomia
Think it’s making my POTS symptoms worse too.
In context ↗ - Pain & fibromyalgia
Had mine for both pelvic pain and gender dysphoria.
In context ↗