ME/CFS
Severe → no benefitNeeds ongoing treatment
ME/CFS with bedbound spells, no overall improvement after beta blockers and Cytomel
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
Living with CFS is the most disciplined thing I've ever done in my life.
In context ↗ - At worst: Severe
I ordered flowers for my desk I can look at from my bed that gives me small joy to see bloom.
In context ↗ - Now: No benefit
I do still have to severely limit any screen time or I feel ill.
In context ↗
Read from 7 of their posts and comments; links to the 5 this page draws on
Summary
They described living with CFS, with bad spells spent in bed and severe limits on screen time, plus body and hand pain. Beta blockers helped day to day, and quitting their job helped with a fight-or-flight state; valium was used when it spiked. Cytomel made their dysautonomia much worse. A 2.5 mg dose helped, and two tries at a higher dose caused agitation.
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What they tried
Also tried
Their words about each treatment
- valium · Helped
when it spikes I use valium to get my body to turn
In context ↗ - Beta blockers · Helped
Beta blockers help me a lot on a day to day basis
In context ↗ - active rest (self massage, humming, meditation) · Helped
Resting as much as possible (active rest, like self massage, humming, meditation, etc)
In context ↗ - pacing · Helped
pacing is a must for me to stay out of that state
In context ↗ - cytomel · Worse
cytomel was terrible for my dysautonomia symptoms and really messed with my sympathetic nervous system
In context ↗ - LDN · Helped
2.5mg I've tried twice to go up but it has made me feel really agitated both times even after a week and 2.5 helps so here I stay :)
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 |
|---|---|---|
| onset | developed ME/CFSLiving with CFS is the most disciplined thing I've ever done in my lifeIn context ↗ | Not stated |
| 2025-10 | bad spell, largely in bedI ordered flowers for my desk I can look at from my bed that gives me small joy to see bloom.In context ↗ | Severe |
| 2025-10-23 | quit their job and the fight-or-flight state easedMine only got better after I quit my jobIn context ↗ | Moderate |
| 2026-01-15 | on low-dose naltrexone 2.5 mg and beta blockers, still severely limiting screen time2.5 helps so here I stayIn context ↗ | Moderate |
Adverse events
- Liothyronine (Cytomel)“cytomel was terrible for my dysautonomia symptoms and really messed with my sympathetic nervous system” In context ↗ Made symptoms worse
- Low-dose naltrexone“2.5mg I've tried twice to go up but it has made me feel really agitated both times even after a week and 2.5 helps so here I stay :)” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
too much exertion can flip me to that hyper-aroused state and then back around to "hypo-aroused" and bedbound
In context ↗ - POTS & dysautonomia
cytomel was terrible for my dysautonomia symptoms and really messed with my sympathetic nervous system
In context ↗ - Pain & fibromyalgia
I will use the voice navigation if my body hurts and my hands hurt
In context ↗