ME/CFS
Severe → no benefitIll for 1 year
ME/CFS crashes and a year at same baseline, now stable with energy-saving aids
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 1 year
- Last post
- Sep 2018
In their words
- Condition: ME/CFS
my clinic seems to treat cfs
In context ↗ - At worst: Severe
Wet wipes are a lifesaver for me if I can't shower & I brush my teeth in bed most days.
In context ↗ - Now: No benefit
My average is just as bad as it has been for the past year
In context ↗
Summary
Pebble 56957 had CFS with frequent boom-and-bust crashes and a baseline that had stayed as bad for the past year. A clinic-led slow increase in activity only caused problems; what helped was reducing the energy each task took, using mobility aids, help from others and doing chores in smaller pieces. They were stable apart from appointments every month or so, brushing their teeth in bed most days.
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What they tried
Their words about each treatment
- slowly increasing high energy hrs · Worse
Slowly increasing my high energy hrs has only caused issues so far.
In context ↗ - reducing the energy needed for a task · Helped
All that has "worked" for me is reducing the energy needed for a task (mobility aids, help from others, doing less of a chore at a time over a much longer period, ect).
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. 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 |
|---|---|---|---|
| — | CFS onset, date not given; baseline already poorMy average is just as bad as it has been for the past yearIn context ↗ | Not stated | |
| before 2018-09-07 | slowly raising high-energy hours caused problemsSlowly increasing my high energy hrs has only caused issues so far.In context ↗ | Severe | Graded rehab and self-made programmes |
| 2018-09-07 | stable baseline, still as bad as the past yearI'm 'stable' apart from drs appointments and stuff every month or so.In context ↗ | Severe |
Adverse events
- Graded rehab and self-made programmes“Slowly increasing my high energy hrs has only caused issues so far. Which is the main way my clinic seems to treat cfs.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
with the boom/bust thing you have to deal with crashes frequently too
In context ↗