ME/CFS fatigue and crashes for 14 years; pacing and diet helped, then relapse
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 14 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
But since getting into a PEM crash a few weeks ago
In context ↗ - At worst: Moderate
I had a bad crash in 2020, but over two years I built up to being able to walk for a few km to get groceries. That would be all I could do for the day and would generally have to rest the next day or two.
In context ↗ - Now: Relapsed
been fatigued and weak and radically resting for 10 days and tried another walk, taht night the pounding heart again and exhaustion next day and been home since then again
In context ↗ - Began after: nothing they could name
Started fatigue, non restful sleep then followed by a lot of sensitivities.
In context ↗
Summary
Pebble 89762 had fatigue, unrefreshing sleep and sensitivities for about 14 years, with crashes lasting months. After a bad crash in 2020, two years of pacing, diet and supplements built them up to walking a few km for groceries, resting a day or two after. In August 2026 a week of overactivity brought a crash with a pounding heart, near-fainting and days in bed; weeks later they were still weak and shaky after food.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
I work between avoiding deconditioning and pacing, and I did slowly slowly build up to my activity levels that I do partake in.
In context ↗ - gradually built up activity levels · Helped
over two years I built up to being able to walk for a few km to get groceries
In context ↗ - diet (eating enough) · Helped
As long as I'm adequately fueled I've found. I'm not one who can skimp on food, at all.
In context ↗ - some supplements · Helped
through lifetstyle, pacing, diet and some supplements
In context ↗ - psychological support · Helped
and actually having psychological support has been helpful in some regard too
In context ↗ - radically resting · Not said
Then been fatigued and weak and radically resting for 10 days
In context ↗ - working on fear response · Helped
I'm working on fear response and all that, it's helpful to not heighten and prolong the symprms beyond what they actually are.
In context ↗
Approaches: CBT & mindset · Pacing · Physiotherapy and rehab
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 chart starts 7.5 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| onset | fatigue, unrefreshing sleep, then many sensitivitiesStarted fatigue, non restful sleep then followed by a lot of sensitivities.In context ↗ | Not stated | |
| 2020 | bad crash lasting monthsI had a bad crash in 2020In context ↗ | Moderate | |
| 2022 | built up over two years to walking a few km to the shopsover two years I built up to being able to walk for a few km to get groceriesIn context ↗ | Mild | Pacing and the energy envelope |
| August 2026 | crashed after a late social event, grocery shopping and a long walkIn bed for three days after that waking frequently at night with an absolutely pounding heartIn context ↗ | Severe | |
| 2026-09-07 | still in a PEM crash, weak and shaky after foodsince getting into a PEM crash a few weeks ago I'm finding myself weak and shakey after foodIn context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
since getting into a PEM crash a few weeks ago
In context ↗ - Sleep problems
Started fatigue, non restful sleep
In context ↗ - Heart symptoms & palpitations
waking frequently at night with an absolutely pounding heart
In context ↗ - Muscle weakness
I'm finding myself weak and shakey after food
In context ↗ - Anxiety & low mood
the adrenaline makes me physically anxious which makes my thoughts incredibly anxious
In context ↗ - POTS & dysautonomia
tried to meet a friend and then almost fainted
In context ↗ - Temperature regulation
temperature spiked at one point but I don't feel feverish, more like too hot and uncomfortable
In context ↗
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