Bed- and couch-bound with ME/CFS, now much better with pacing and movement plan
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4.5 years
- Last post
- Sep 2025
In their words
- Condition: ME/CFS
I was diagnosed with ME CFS and fibro by a great rheumatologist a couple years ago.
In context ↗ - At worst: Severe
I’ve come a long way from 3 years ago when I was bed bound and couch bound. ... when that happens I can’t think, move, make myself food- I am bed bound.
- Now: Much better
over the past 4 months or so I’ve been able to do things I wasn’t able to prior like tend to our vegetable garden, walk the dog, make meals again ... Walking isn’t super accessible right now.
Read from 7 of their posts and comments; links to the 7 this page draws on
Summary
Beacon 24290, a woman in Canada, was bed- and couch-bound by ME/CFS and fibromyalgia around 2021. She credits a physiotherapist-led movement plan, rest and pacing, therapy and a year of prednisone for ulcerative colitis with gradual gains; by 2024 she walked 3-5km and cooked meals. A COVID infection in late 2024 set her back. By mid-2025 she gardened and walked the dog, but by September 2025 walking was again limited and she feared a crash.
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What they tried
What they credit
Their words about each treatment
- physiotherapist plan for movement and walking · Helped
At the start I found a great physiotherapist that understood CFS and fibro. We came up with a plan for movement and walking.
In context ↗ - rest · Helped
I rested, a lot.
In context ↗ - therapy and boundaries · Helped
Therapy and boundaries.
In context ↗ - prednisone · Helped
I was on prednisone for a year for my ulcerative colitis
In context ↗ - pacing · Helped
I pace aggressively throughout my days.
In context ↗ - masking · Helped
Wearing my mask nearly everywhere helps me a lot too.. I’m sure I actually don’t experience this kind of crash all to often BECAUSE I’m masking.
In context ↗ - yoga and stretching · Not said
Some yoga and stretching.
In context ↗ - swimming · Helped
Some swimming felt good this summer
In context ↗
Approaches: CBT & mindset · Other drugs and medicines · Pacing · Physiotherapy and rehab · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2021 | Bed bound and couch bound with ME/CFS and fibromyalgiaI was bed bound and couch boundIn context ↗ | Severe | |
| 2024-04 | Able to walk 3-5km, shower and cook mealsNow I am able to walk 3-5km in the park! I can shower! I can cook 2-3 meals a day!In context ↗ | Mild | |
| 2024-11 | Set back after COVID; 15-20 minute walk was hardI just had COVID and a month ago and trying to figure out my baseline again. Today I walked maybe 15-20 minutes and it was hard.In context ↗ | Moderate | |
| 2025-07 | Gardening, walking the dog, cooking, playing with nieceover the past 4 months or so I’ve been able to do things I wasn’t able to prior like tend to our vegetable garden, walk the dog, make meals againIn context ↗ | Mild | Pacing and the energy envelope |
| 2025-09 | Teetering, walking not accessible right nowWalking isn’t super accessible right now. ... I’m already teetering due to many months of emotional distress.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
when that happens I can’t think, move, make myself food- I am bed bound
In context ↗ - POTS & dysautonomia
The POTS and fibromyalgia in me needs movement.
In context ↗ - Sleep problems
sleep was never restful
In context ↗ - Pain & fibromyalgia
my fibro feels way better with movements
In context ↗ - Headaches & migraine
chronic migraines
In context ↗ - Gut problems
a flare of my ulcerative colitis
In context ↗ - Anxiety & low mood
I’m already teetering due to many months of emotional distress
In context ↗
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