ME/CFS
Severe → no benefit
Bedbound and foggy with ME/CFS; duloxetine did nothing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
I also have adhd and cfs+fibro
In context ↗ - At worst: Severe
I ended up finding that I was a functional and eager mind stuck in a bed bound body
In context ↗ - Now: No benefit
It really is so hard to think clearly and rationally when thinking through this exhausted fog….
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
An Australian with ME/CFS or fibromyalgia, hypermobile joints and ADHD has described being bed bound, dead tired and foggy. Exercise eased their joint pain but set off fatigue and pain spikes, and caring for a new dog caused excruciating flare-ups. Duloxetine did nothing but cause brain zaps, and they stopped their ADHD medication and adapted their surroundings instead, feeling they achieved more. They are on a disability pension.
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What they tried
Also tried
deep tissue massage gun· Helpedaltering my environments to suit my adhd· Helpedduloxetine· Worseexercise· Worseadhd meds· Worsetherapy· Worsestretching· Not said
Their words about each treatment
- deep tissue massage gun · Helped
The best purchase I made this year was a deep tissue massage gun - definitely so helpful.
In context ↗ - stretching · Not said
Stretching is a little more fraught for me unfortunately
In context ↗ - duloxetine · Worse
I have been on duloxetine before cause that was supposed to help but that did nothing but give me brain zaps.
In context ↗ - exercise · Worse
Exercise helps my hypermobility pain as it helps to stabilise my joints, but it sets off massive fatigue and pain spikes.
In context ↗ - adhd meds · Worse
unfortunately didn’t have the positive effect when I was on my adhd meds with cfs ... I overdid things and ended up paying the price
In context ↗ - altering my environments to suit my adhd · Helped
It’s not foolproof but I find the balance is much better and I’m achieving far more than I could before.
In context ↗ - therapy · Worse
I’ve been in therapy before with multiple different therapists and whenever I tried to talk about this stuff they just shut me down
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 |
|---|---|---|
| — | bed bound with CFS and fibromyalgia, too exhausted to do thingsI ended up finding that I was a functional and eager mind stuck in a bed bound bodyIn context ↗ | Severe |
| 2024-02-02 | fatigue and pain spikes after exercise and dog careExercise helps my hypermobility pain as it helps to stabilise my joints, but it sets off massive fatigue and pain spikesIn context ↗ | Moderate |
| 2024-02-09 | stopped ADHD medication and adapted surroundings insteadI find the balance is much better and I’m achieving far more than I could beforeIn context ↗ | Moderate |
| 2024-06-08 | still exhausted and foggy, struggling with body image and traumaso hard to think clearly and rationally when thinking through this exhausted fogIn context ↗ | Moderate |
Adverse events
- Duloxetine (Cymbalta)“I have been on duloxetine before cause that was supposed to help but that did nothing but give me brain zaps.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
having loose joints sets off my fibro pain
In context ↗ - Post-exertional malaise
it always gets worse after I do things
In context ↗ - Brain fog
so hard to think clearly and rationally when thinking through this exhausted fog
In context ↗