Mild ME/CFS twice as bad; no improvement on amitriptyline and LDN
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- Not stated
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
Yeah CFS is a huge problem
In context ↗ - At worst: Mild
And have been thinking I'm still mild
In context ↗ - Now: No benefit
it has gotten twice as bad this year and it will get worse
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Breeze 96589 described being mild with ME/CFS, but said it had got twice as bad during the year, with a lot of work missed. After starting amitriptyline and LDN last week they were sleeping badly, and on the Monday they thought the amitriptyline made them extremely emotional and wishing for death all day; they hadn't felt like that since being very depressed, though they thought they had felt worse in their early twenties. They worried a crash would lower their baseline further.
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What they tried
Also tried
Their words about each treatment
- Amitriptyline · Worse
I think the Amitriptyline made my emotions extremely bad and all I could think of was wishing death all day
In context ↗ - LDN · Not said
started Amitriptyline and LDN last week and wasn't getting good sleep
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | living with ME/CFS, still mild | Mild |
| 2026 | got twice as bad over the yearit has gotten twice as bad this year and it will get worseIn context ↗ | Mild |
| 2026-09-01 | started amitriptyline and LDN, poor sleep, missing work, very low moodstarted Amitriptyline and LDN last week and wasn't getting good sleep missing workIn context ↗ | Mild |
Adverse events
- Amitriptyline (Elavil)“started Amitriptyline and LDN last week and wasn't getting good sleep” In context ↗ Insomnia from treatment
- Low-dose naltrexone“started Amitriptyline and LDN last week and wasn't getting good sleep” In context ↗ Insomnia from treatment
- Amitriptyline (Elavil)“I think the Amitriptyline made my emotions extremely bad” In context ↗ Mood or psychiatric effects
- Amitriptyline (Elavil)“all I could think of was wishing death all day” In context ↗ Suicidal thoughts or attempt
Symptoms mentioned
Their words about their symptoms
- Sleep problems
wasn't getting good sleep
In context ↗ - Anxiety & low mood
I too feel this way often and I feel selfish for feeling like it
In context ↗ - Post-exertional malaise
I feel like PEM really changes your mental when it happens
In context ↗