ME/CFS
Outcome unclear
ME/CFS flares, adjustable bed and online meetings helping sleep and loneliness
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- Not stated
- Last post
- Nov 2023
In their words
- Condition: ME/CFS
I've definitely pushed through and regretted more times than I can count.
In context ↗ - At worst: Moderate
It makes me feel normal being around a "room" full of people who basically live in their beds/ homes too and are in constant pain.
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
A Reddit user on an ME/CFS forum describes cancelling plans when symptoms flare and relating to others who live largely in bed or at home with constant pain. They bought an adjustable bed, which reduced movement transfer so they stopped waking from their husband's movements. They have taken amitriptyline on and off cold turkey with no side effects, but coming off cymbalta was the worst thing ever. Online Chronic Pain Anonymous meetings help with loneliness.
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What they tried
Also tried
chronic pain and illness anonymous meetings (phone/zoom)· Helpedadjustable bed (Amazon brand, two twins pushed together)· Helpedlaying head upside down over the edge of the bed· Helpedamitriptyline· Not saidcymbalta· Not said
Their words about each treatment
- amitriptyline · Not said
I've gone on and off amitriptyline cold turkey several times over the years (using it to try to combat different conditions/symptoms) with really no side effects.
In context ↗ - cymbalta · Not said
going off cymbalta was the worst thing ever for me
In context ↗ - chronic pain and illness anonymous meetings (phone/zoom) · Helped
I've found attending online support groups to be really encouraging. I like chronic pain and illness anonymous
In context ↗ - adjustable bed (Amazon brand, two twins pushed together) · Helped
It's also nice because there isn't the same movement transfer, like our old normal bed. I used to wake up all night from his movements.
In context ↗ - laying head upside down over the edge of the bed · Helped
if I am having an episode and I lay my head upside down over the edge of my bed it goes away
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were |
|---|---|---|
| — | living largely in bed or at home, in constant painwho basically live in their beds/ homes too and are in constant painIn context ↗ | Moderate |
| 2023-11-06 | still largely home-bound and lonely; online support meetings helpIt really helps with the loneliness and lack of social interactionIn context ↗ | Moderate |
Adverse events
- Duloxetine (Cymbalta)“going off cymbalta was the worst thing ever for me” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I've definitely pushed through and regretted more times than I can count
In context ↗ - Pain & fibromyalgia
who basically live in their beds/ homes too and are in constant pain
In context ↗ - Sleep problems
I used to wake up all night from his movements
In context ↗ - Breathlessness
if I am having an episode and I lay my head upside down over the edge of my bed it goes away
In context ↗