ME/CFS
Severe → no benefitNeeds ongoing treatment
ME/CFS with brain fog, pain and crashes; no improvement after pacing or cancer removal
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
With CFS, you *need* to sleep but don't necessarily want to.
In context ↗ - At worst: Severe
Even basic stuff left me in so much pain and stiffness I could barely walk. Or so little energy I couldn't stand long enough or lift my arms to shower.
In context ↗ - Now: No benefit
I'm usually able to make it about 3-4 decent days in a row, as long as I pace, and then crash for 3-4 days where I sleep insane amounts and only move from my bed to the couch.
In context ↗
Summary
Pebble 33205 has ME/CFS with constant brain fog, long sleeps, widespread pain and post-exertional crashes; exercise is out of the question. Pacing gives three or four decent days before a crash of three or four days in bed or on the couch. Removal of a papillary thyroid cancer changed nothing. In their latest post they still could not lift their arms to wash their hair, and overdoing it took them out for days.
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What they tried
Also tried
Their words about each treatment
- pacing · Helped
I'm usually able to make it about 3-4 decent days in a row, as long as I pace, and then crash for 3-4 days
In context ↗ - thyroid removal · No change
Thought it explained my symptoms and I'd get better. Turns out nothing changed with its removal.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | ME/CFS; exercise out of the question, pacing buys a few decent days before a crashExercise is pretty much out of the question now. Even basic stuff left me in so much pain and stiffness I could barely walk.In context ↗ | Severe |
| 2024-03-02 | still crashing for days after overdoing it, sleeping 15-17 hoursOn days where I do too much, I'm taken out for days after. The PEM crash.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
On days where I do too much, I'm taken out for days after. The PEM crash.
In context ↗ - Brain fog
Brain fog is probably the only constant that never gets better no matter the pacing.
In context ↗ - Sleep problems
Like sleeping 15-17 hours at a time and still back to sleep that night.
In context ↗ - Pain & fibromyalgia
Sometimes there's immense pain associated with it where my whole body hurts for absolutely no reason.
In context ↗ - Muscle weakness
I can't lift my arms long enough to wash my hair
In context ↗ - Anxiety & low mood
I can tell the difference between my depression fatigue and cfs fatigue.
In context ↗