ME/CFS crashes with stroke-like symptoms, somewhat better with pacing
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 2 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I was diagnosed with ME/CFS 2 years ago.
In context ↗ - At worst: Very severe
ich habe auch ME/CFS und am Anfang war es bei mir ähnlich schlimm wie du es beschreibst
In context ↗ - Now: Somewhat better
I rest, pace myself and carefully manage my energy, and then I start feeling a little better and notice that I can do more ... and then I end up with PEM and feel like I’m back at the beginning
In context ↗
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Crane 48984 was diagnosed with ME/CFS two years before May 2026. During crashes they get stroke-like symptoms — one eye closing, facial numbness, slurred speech — and were once taken to hospital, where scans were normal. Pacing brings small gains and they can do more, but they keep crashing into PEM, and daily gut pain and diarrhoea drain their energy.
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What they tried
Also tried
Their words about each treatment
- probiotics · No change
I also tried probiotics, but they didn’t help.
In context ↗ - nutritional counselling · Not said
I’ve also had nutritional counselling and I’m already eating quite “anti-inflammatory” / gentle foods.
In context ↗ - gentle / anti-inflammatory diet (avoiding corn, peppers, tomatoes, fewer seeds and nuts, lower fats) · Helped
I avoid things I don’t digest well like corn, peppers, tomatoes etc., and I’ve cut down on seeds and nuts quite a bit. ... It helps a bit, but things are still very up and down.
In context ↗ - psyllium husk (Flohsamenschalen) · Helped
One thing that actually helped me during constipation phases is psyllium husk (Flohsamenschalen in German).
In context ↗ - pacing and rest (reducing everything, not fighting the symptoms) · Helped
Was mir geholfen hat: wirklich konsequent alles zu reduzieren und nicht gegen die Symptome anzukämpfen. ... I rest, pace myself and carefully manage my energy, and then I start feeling a little better
Approaches: Pacing
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| — | onset of ME/CFS; at the beginning as bad as a bedbound posterHey, ich habe auch ME/CFS und am Anfang war es bei mir ähnlich schlimm wie du es beschreibst.In context ↗ | |
| 2026-05-02 | stroke-like neurological episodes during crashes; gut problems draining energyDuring crashes, I sometimes get symptoms that look stroke-like, which is very frightening.In context ↗ | |
| 2026-08-19 | pacing gives small gains, can do more, then crashes with PEMI rest, pace myself and carefully manage my energy, and then I start feeling a little better and notice that I can do more.In context ↗ | Pacing and the energy envelope |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
My biggest struggle is PEM.
In context ↗ - Gut problems
Every day I have significant abdominal discomfort, mainly on the right side, and frequent diarrhea.
In context ↗ - Neuropathy & tingling
I get facial numbness, warmth, tingling
In context ↗ - POTS & dysautonomia
Bei Angst/POTS versuche ich, so gut es geht ruhig zu bleiben
In context ↗
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