Housebound with ME/CFS and dysautonomia, somewhat better with pacing and better eating
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 6 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
I have MCAS, ME/CFS (moderate/housebound) and Dysautonomia
In context ↗ - At worst: Moderate
I have MCAS, ME/CFS (moderate/housebound) and Dysautonomia ... I am housebound now
- Now: Somewhat better
I was struggling to go to the toilets and now I can walk like 15 min? ... Physically I feel better but mentally I feel so wrong.
In context ↗
Read from 15 of their posts and comments; links to the 7 this page draws on
Summary
Otter 68967 was ill for about five years before an ME/CFS diagnosis, and was housebound with MCAS and dysautonomia, having crashed hard at the end of 2024. A January 2026 evening of panic, tremors and palpitations after dark chocolate and codeine led them to stabilise with strict pacing and better eating. By May 2026 they could walk about 15 minutes and see friends again, though still doubting the illness.
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What they tried
What they credit
Also tried
Their words about each treatment
- SSRIs · Much worse
They made me so much worse
In context ↗ - alcohol · Helped
also alcohol helped a lot with my energy and pain
In context ↗ - some supplements · Not said
My doctor didn't even tell me about it or how to manage it expect giving me some supplements.
In context ↗ - dafalgan codeine · Helped
Sometimes when I can't sleep bc of the pain I take a dafalgan codeine, it's basically the only painkiller that works
In context ↗ - pacing · Helped
If I paced well for a day, the day after I either don't feel worse or the same of even a bit better.
In context ↗ - diet · Helped
This event scared me into making more efforts on my diet and hygiene in general.
In context ↗ - meditating · Helped
Writing and meditating helps
In context ↗
Approaches: Pacing
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 5.8 years after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2020 | ME/CFS onsetit took 5 years for me to get the diag, I have been diag for a year.In context ↗ | Not stated |
| 2024-12 | hard crash, kept worsening through 2025I crashed hard end of 2024 (didn't know I had ME back then) and 2025 felt like a second. I kept worsening myself because I didn't really understand the pacingIn context ↗ | Not stated |
| 2026-03 | struggling even to get to the toilet2 months ago I was struggling to go to the toilets and now I can walk like 15 min?In context ↗ | Moderate |
| 2026-04-06 | a few improvements after stabilising with pacing and dietI am not there yet, but I did have a few improvements recently.In context ↗ | Moderate |
| 2026-05-29 | physically better but doubting the illness mentallyPhysically I feel better but mentally I feel so wrong.In context ↗ | Moderate |
Adverse events
- Antidepressants (unspecified)“They made me so much worse, i can't really prove it bc it was a while ago but I think they did a lot of damages.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I was crashing non stop before and didn't know where I was going to end up
In context ↗ - Brain fog
I was also in a confused state, slurred speech
In context ↗ - POTS & dysautonomia
I have MCAS, ME/CFS (moderate/housebound) and Dysautonomia
In context ↗ - Sleep problems
Sometimes when I can't sleep bc of the pain
In context ↗ - Heart symptoms & palpitations
I started feeling nausea, palpitations ect.
In context ↗ - Neuropathy & tingling
my limbs were tingling, I was having tremors
In context ↗ - Anxiety & low mood
Then a wave of full panic took over my body
In context ↗ - Breathlessness
I also couldn't breathe
In context ↗ - Light & noise sensitivity
I was also very sensitive to touch
In context ↗
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