ME/CFS fatigue worsening, days mostly horizontal, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 16 years
- Last post
- Oct 2021
In their words
- Condition: ME/CFS
Anyone with a comorbid mental health disorder get a CFS or other fatigue-related diagnosis?
In context ↗ - At worst: Severe
I'm spending more of my days horizontal on the couch, intermittently napping.
In context ↗ - Now: No benefit
Over the last few months, it seems to be getting worse
In context ↗ - Began after: nothing they could name
I first started experiencing regular fatigue around the time I started puberty
- Says they never had: POTS & dysautonomia
tested for POTS (negative)
Summary
Orchid 77933 had regular fatigue from puberty, with insomnia from age 14 to 18. By late 2021, at nearly 29, they were spending more of their days horizontal on the couch, napping, and struggling to do chores or feed themselves, and the fatigue was worsening. Stimulants helped only somewhat despite extensive therapy, more than a dozen antidepressants and TMS. Starting Accutane in October made things worse.
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What they tried
Also tried
Their words about each treatment
- Vyvanse · Helped
Vyvanse helps me get through the day. But I'm even tired on that.
In context ↗ - caffeine · Not said
I'll still pass out on the couch after taking Vyvanse and caffeine.
In context ↗ - therapy · Not said
I've gone through loads of therapy and medications, and tests for physical causes and I'm still crippled by fatigue.
In context ↗ - antidepressants and other psychotropic medications · Not said
I've exhausted more than a dozen antidepressants and other psychotropic medications.
In context ↗ - transcranial magnetic stimulation · Not said
I've done transcranial magnetic stimulation, as well.
In context ↗ - Accutane · Worse
I did make things worse for myself by starting Accutane in early October
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. The chart starts 15.7 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| around puberty | regular fatigue began around pubertyI first started experiencing regular fatigue around the time I started puberty, and I've had few breaks from it.In context ↗ | Not stated |
| fall 2021 | fatigue worsening, more days horizontal on the couchOver the last few months, it seems to be getting worse -- I'm spending more of my days horizontal on the couch, intermittently napping.In context ↗ | Severe |
| 2021-10-29 | permanently exhausted, struggling with basic chores and feeding themselvesI'm struggling to complete basic chores and feed myself.In context ↗ | Severe |
Adverse events
- Isotretinoin (Accutane)“I did make things worse for myself by starting Accutane in early October” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I experienced insomnia from age 14 to 18, sleeping for maybe four hours every day if I was lucky.
In context ↗ - Anxiety & low mood
I'm legally disabled by PTSD and depression
In context ↗ - Post-exertional malaise
I worked very hard for the first month or so, and afterwards I just couldn't.
In context ↗