ME/CFS improved with rest and pacing, then relapsed after pushing further
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 8 years
- Last post
- Aug 2018
In their words
- Condition: ME/CFS
I’ve had cfs since I was 12
In context ↗ - At worst: Severe
I’m completely bedridden right now.
In context ↗ - Now: Relapsed
I’m currently homebound/bedridden. being bedridden is more recent though.
In context ↗
Read from 14 of their posts and comments; links to the 9 this page draws on
Summary
Had CFS since age 12, moderate to severe for eight years, pushing through school and work until sleep filled most days. Resting and pacing on their own for a year brought improvement: awake all day with breaks, weekly laundry, though still homebound. Pushing further after doctors and family urged more activity left them completely bedridden by August 2018, with fibromyalgia pain, weak muscles and depression.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
now, with pacing myself, which i’ve just learned to do on my own, I’m able to stay awake all day with breaks
In context ↗ - resting · Helped
I rested for a year and was doing really good
In context ↗ - pushing herself to do more · Worse
honestly I have been pushing myself to. and I’m feelin the affects and it’s not good
In context ↗ - weight lifting · Worse
I tried before a little and it hurt me a lot
In context ↗ - counselor · Not said
I saw a counselor a few times years ago but I missed like 4 sessions
In context ↗ - vitamin D · No change
now it’s back up to normal, I’ve been taking it daily since then and will have to forever now
In context ↗ - gabapentin · No change
I’ve been on gabapentin for months. they just keep upping my dose even though I keep saying it’s not working
In context ↗ - light stretching · Not said
right now I’m just trying for do light stretching when i can to help with pain and stress
In context ↗
Approaches: Pacing · Radical rest
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 first step with a time is 8 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 | After |
|---|---|---|---|
| age 12 | CFS began at age 12I’ve had cfs since I was 12In context ↗ | Not stated | |
| teenage years, before learning pacing | forcing themselves through school, fitness classes and workthen my whole life was just doing those things barely/rarely and sleeping 24/7In context ↗ | Severe | |
| 2018-07 | a year of rest and self-taught pacing; still homebound but up all dayI’m able to stay awake all day with breaks, and I’m able to do my laundry weekly and keep my room cleanIn context ↗ | Moderate | Pacing and the energy envelope |
| 2018-07 | pushed themselves to do more and got worseand then I over exerted myselfIn context ↗ | Severe | |
| 2018-08-08 | completely bedridden and homeboundI’m completely bedridden right now.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
it causes me a ton of pain and will make me have to sleep for days afterwards
In context ↗ - Pain & fibromyalgia
I have fibromyalgia too and I have really bad joint pain
In context ↗ - Anxiety & low mood
I’ve been extremely depressed for years because of this
In context ↗ - Muscle weakness
my muscles get weak/tired pretty easily
In context ↗ - Temperature regulation
the heat makes things worse for me
In context ↗ - Sleep problems
my whole life was just doing those things barely/rarely and sleeping 24/7
In context ↗
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