ME/CFS after a concussion, limited but somewhat better with pacing and mental naps
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Mar 2025
In their words
- Condition: ME/CFS
I have ME, fibro, and am getting tested for POTS (looking pretty likely).
In context ↗ - At worst: Severe
Before learning to pace myself and actually prioritize things like true rest and recovery I could barely walk up a small flight of stairs without having to lay down for an hour or 5.
In context ↗ - Now: Somewhat better
Now, I mean I can’t do much, but at least I can do some things. I can do some more cleaning around my home so I can live more comfortably.
In context ↗ - Began after: injury or surgery
the concussion I got a few years ago (that gave me ME)
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
Kestrel 16776 developed ME after a concussion about four years before writing, with fibromyalgia, migraines and temperature problems. Eating, screens and easy tasks triggered post-exertional malaise. Pacing, including 'mental naps' every 60-90 minutes, brought large improvements; they could now do gentle recumbent exercise and strength training with a trainer, while B12 supplements and injections did nothing. They remained limited but could do far more than a year earlier.
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What they tried
What they credit
Also tried
Their words about each treatment
- small meals · Worse
tried doing the small meals thing to and it was such a horrible experience
In context ↗ - fasting · Helped
switching to “fasting” ... After the meal/snack I’m dead to the world for a while, but at least it’s only once a day and not all day long
In context ↗ - blue light filters · Helped
Blue light filters and migraine glasses help a little bit too
In context ↗ - migraine glasses · Helped
Blue light filters and migraine glasses help a little bit too, mostly just with the physical eye tiredness
In context ↗ - eyedrops · Helped
And eyedrops are pretty helpful in some ways.
In context ↗ - mental naps · Helped a lot
Since doing this I’ve had huge improvements in my symptoms ... it has been one of the most helpful things I’ve tried
In context ↗ - b12 supplements and injections · No change
I’ve taken b12 supplements for years, they did nothing. My b12 levels were very healthy. And I even tried injections for *a whole damn year* and they did **nothing**
In context ↗ - sleep medicine · Not said
if I don’t take my sleep medicine I physically cannot fall asleep for at least 48 hours
In context ↗ - pacing · Helped a lot
Pacing has been an absolute life saver. I’m still learning to do it properly, but days that I actually keep my mind on pacing are wayyy easier and make the following days survivable
In context ↗ - recumbent exercises with a personal trainer · Helped
I got a personal trainer who specializes in helping people after strokes and brain injuries ... we’ve done lots of stretching and strength trainings with the leg and arm muscles ... it’s so so so much more then I could even do a year ago
In context ↗
Approaches: 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 | concussion/brain injury triggered MEthe concussion I got a few years ago (that gave me ME)In context ↗ | Severe | |
| 2024-03-09 | large improvement in symptoms from regular mental napsSince doing this I’ve had huge improvements in my symptoms.In context ↗ | Moderate | Pacing and the energy envelope |
| 2025-03-14 | able to clean at home and do gentle recumbent exercise with a trainerNow, I mean I can’t do much, but at least I can do some things.In context ↗ | Moderate | Pacing and the energy envelope |
Adverse events
- Small, frequent meals“tried doing the small meals thing to and it was such a horrible experience” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Even easy or low energy tasks (like checking my phone, going through mail, or listening to music) can zap my energy and push me towards PEM.
In context ↗ - Sleep problems
if I don’t take my sleep medicine I physically cannot fall asleep for at least 48 hours
In context ↗ - Temperature regulation
my brain injury caused my brain to forget how to regulate body temps
In context ↗ - Mast cell (MCAS) & allergies
I’m allergic to the cold so I’ll get hives in any temps lower than 40°f
In context ↗ - Headaches & migraine
Im dx’ed with ME, Fibro, migraines, and post concussion syndrome
In context ↗ - Pain & fibromyalgia
I have ME, fibro, and am getting tested for POTS
In context ↗ - Vision problems
Blue light filters and migraine glasses help a little bit too, mostly just with the physical eye tiredness
In context ↗
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