Barely able to sit up in bed with ME/CFS, now much better with pacing and a wheelchair
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 9 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
i've had cfs now for 9 years
In context ↗ - At worst: Very severe
I went from the 14 year old who could barely even sit up in bed let alone get out of bed
In context ↗ - Now: Much better
no I'm not recovered ... my life has improved so much.
In context ↗
Summary
Marsh 52450 was diagnosed with CFS in 2018 at age 14 and spent years barely able to sit up in bed, with PEM, severe brain fog, gut and joint pain and migraines. Finding her PEM triggers, pacing, using a wheelchair and cutting out toxic family and friends gradually let her sit up and go outside for hours. At 23 she still cannot walk 10 minutes or stand without almost passing out; not recovered, but her quality of life has greatly improved.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- pizotifen · Helped
My migraines are controlled with pizotifen
In context ↗ - codeine · Helped
the only thing that helps is 60mg of codeine
In context ↗ - finding my PEM triggers · Helped
i found finding my PEM triggers a massively helpful thing
In context ↗ - pacing · Helped
being able to pace was so beneficial to not overdoing it
In context ↗ - grounding my nervous system · Helped
finding other ways to slowly ground my nervous system really helped
In context ↗ - teaching myself that I am not in danger anymore and I am safe to rest · Helped
trying to teach myself that I am not in danger anymore and I am safe to rest has been a major help
In context ↗ - using my wheelchair · Helped
Using my wheelchair has given me a new quality of life
In context ↗ - cutting out toxic family and friends · Helped
cutting out toxic family and friends has changed my quality of life
In context ↗
Approaches: Pacing
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 |
|---|---|---|---|
| 2018 (age 14) | Diagnosed with CFS at 14; barely able to sit up in bedI'm a female aged 22 who was diagnosed with cfs in 2018 when I was 14In context ↗ | Very severe | |
| 2026-08-26 | Gradual improvement with pacing, PEM trigger removal, wheelchair use and cutting out toxic peopleI went from being horizontal all the time to being able to sit up in a wheelchair and go outside for hours at a timeIn context ↗ | Moderate | Pacing and the energy envelope |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
And obviously still get PEM.
In context ↗ - Brain fog
I also get severe brain fog
In context ↗ - Sleep problems
I can sleep 12 hours at night and still need a 3 hour nap a few hours after waking up
In context ↗ - Gut problems
my bowel is just a nightmare
In context ↗ - Pain & fibromyalgia
extreme pain in legs
In context ↗ - Headaches & migraine
My migraines are controlled with pizotifen however I still get pretty bad headaches
In context ↗ - POTS & dysautonomia
I cant walk any further than 10 minutes or stand up without almost passing out
In context ↗ - Light & noise sensitivity
can now finally tolerate being sat up and having the light on my face ... without it physically hurting
In context ↗
Ask Miruvor AI
Similar stories
-
Unable to walk around house with long COVID, much better after pacing and antihistamines
A Canadian man with long COVID for about three years was unable to walk around the house for the first two years, with constant migraines, brain fog and PEM. From year three, pacing, rest, stress reduction, H1/H2 antihistamines, hydroxyzine for sleep,…
-
Mostly bedbound and housebound with ME/CFS, pacing and rest helped before a relapse
Valley 16092 has had ME/CFS and fibromyalgia for about 25 years; stress and lifelong health problems led to a crash from 60-hour workweeks. They never became severe but have been mostly bedbound and housebound, and pacing, rest and comorbidity medication…
-
Mostly housebound with ME/CFS, now a little better on Klonopin and low-dose naltrexone
Joseph, 47, in Los Angeles, developed ME/CFS in January 2024, about 18 days after a second COVID infection. He declined from mild to the bad end of moderate over six months, becoming mostly housebound. Klonopin, low-dose naltrexone, midodrine and propranolol…
-
Long COVID brain fog, somewhat better with nicotine patch and naltrexone
Pebble 25278 developed long COVID with brain fog, distorted smell, headaches, nerve pain and trouble sleeping. A quarter of a 10 mg nicotine patch restored much of their speech and thinking, and low-dose naltrexone further raised their cognitive and physical…