ME/CFS
Mild → no benefitIll for 34 yearsNeeds ongoing treatment
ME/CFS, housebound after overdoing it, no benefit from amitriptyline or Lyrica
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 34 years
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
I’ve had cfs and chronic pain for 30 plus years.
In context ↗ - At worst: Mild
But I work part time ... Hike a bit and try and go to gym when I can
In context ↗ - Now: No benefit
None of these cure shit …….. but I am able to manage symptoms and sleep much better.
In context ↗ - Began after: glandular fever or EBV
I got mono at age of 20 and that’s when everything went downhill
In context ↗
Read from 24 of their posts and comments; links to the 12 this page draws on
Summary
A man who developed CFS after mono at age 20 was ill for over 30 years. He worked part time and hiked or used the gym when able, though overdoing it left him housebound for days. Amitriptyline or doxepin (30 years) and later Lyrica improved his sleep and pain enough to keep that up, but only managed symptoms; stopping amitriptyline brought back poor sleep and body aches. He gained weight on amitriptyline and had severe depression.
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What they tried
Also tried
Their words about each treatment
- Elavil (amitriptyline) · Helped
It has been a lifesaver for me.
In context ↗ - gabapentin · Not said
first gabapentin but gabapentin is short acting so switched to Lyrica
In context ↗ - Lyrica · Helped
I believe lyrica and elavil make it so I can do these things
In context ↗ - adderall · Not said
i try a nibble of my boyfriend’s adderall once in a while …… sometimes it helps but often it makes me more sleepy
In context ↗ - exercise / working out · Worse
I know I would workout more when I felt that way in attempts to decrease the bad feelings ……. And that of course has always made me housebound for a few days lol
In context ↗ - that (tried for depression) · No change
I tried that for depression No help
In context ↗ - ibuprofen · Helped
my body feels better if i take it
In context ↗ - antihistamines · No change
i can barely sleep and antihistamines do NOTHING!
In context ↗ - Cymbalta · No change
it didn’t help me
In context ↗ - CPAP · Worse
I couldn’t sleep with it But mine is mild ……
In context ↗ - caffeine tablets · Helped
In order to get out of bed I started popping caddie tablets while still in bed
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 24 years after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| age 20 | Glandular fever (mono) started the illnessI got mono at age of 20 and that’s when everything went downhillIn context ↗ | Not stated |
| about 20 years ago | Started amitriptyline for sleep; sleep and night pain improvedIt has been a lifesaver for me.In context ↗ | Not stated |
| about ten years ago | Gabapentin, then Lyrica, helped enough to keep working part time and exercisingI believe lyrica and elavil make it so I can do these thingsIn context ↗ | Mild |
| July 2024 | COVID-19 infection brought constant itching and broken sleepi’m itchy all over all the time since testing positive a week ago. i can’t handle thisIn context ↗ | Mild |
| 2026-02-22 | Still managing on amitriptyline and Lyrica, occasionally trying a little of her boyfriend's adderallsometimes it helps but often it makes me more sleepyIn context ↗ | Mild |
Adverse events
- Amitriptyline (Elavil)“BUT I wish I didn’t need it because it causes me to eat more” In context ↗ Side effects
- Amitriptyline (Elavil)“I also think it makes me a little moodier. ... I’m so depressed about the weight gain” Mood or psychiatric effects
- Amphetamine salts (Adderall)“i try a nibble of my boyfriend’s adderall once in a while …… sometimes it helps but often it makes me more sleepy” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
And that of course has always made me housebound for a few days lol
In context ↗ - Sleep problems
if I don’t take it I have issues with sleep and more pain
In context ↗ - Pain & fibromyalgia
i have had CFS and fibro for thirty fing years!
In context ↗ - Anxiety & low mood
I have severe depression and Lyrica helps me
In context ↗