Fatigue, pain and dysautonomia since 2020, somewhat better with pacing and diet
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 6 years
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
Hypermobility / Ehlers-Danlos spectrum (with ME/CFS-type neuroimmune and connective tissue involvement)
In context ↗ - At worst: Moderate
I had to leave public education and have had exercise intolerance since 2020/2021 ... I have been focusing on nervous system regulation ... and focusing on only micro movements.
In context ↗ - Now: Somewhat better
And once I understood what was happening, things did slowly start to stabilize. Not magically — but gradually, with the right kind of rest.
In context ↗ - Began after: another virus
post-viral / dysautonomia / neuroimmune issues
Read from 10 of their posts and comments; links to the 7 this page draws on
Summary
Since 2020 they have had fatigue, pain, dysautonomia and MCAS-type symptoms; in 2023 their hypersomnia was reclassified as narcolepsy type 2, and in 2025 a clinician gave a working framework of hypermobility, POTS-like dysautonomia, MCAS and post-viral illness. They left public education and have had exercise intolerance since 2020/2021. Extreme pacing, diet changes and supplements help them stabilise; low-dose naltrexone worsened their insomnia, and they stopped other treatments and planned to retry it.
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What they tried
What they credit
Also tried
Their words about each treatment
- Stimulants · Helped
Stimulants help with alertness but haven’t touched the deep crash-fatigue, pain, or post-exertional stuff I deal with.
In context ↗ - traditional physical therapy · Worse
I have tried PT 6 different times and always end up worse.
In context ↗ - multiple exercise protocols · Not said
multiple exercise protocols
In context ↗ - diet shifts · Not said
I’ve also started adjusting what I eat
In context ↗ - extreme pacing · Helped
The biggest change for me has been extreme pacing
In context ↗ - Magnesium glycinate + malate · Helped
Magnesium glycinate + malate – for muscle tension, fascial tightness, energy production, and calming my nervous system.
In context ↗ - Vitamin D3/K2 · Helped
Vitamin D3/K2 – for immune regulation, inflammation, and mood.
In context ↗ - Collagen · Helped
Collagen – for joints, connective tissue, gut health, and general stability.
In context ↗ - Unisom · Not said
I sometimes use Unisom or CBD on rough nights to help reset my rhythm.
In context ↗ - Cetirizine (Zyrtec) · Helped
Cetirizine (Zyrtec) – helps with histamine-driven inflammation, itching, swelling, and some of the weird nerve/fascial reactions.
In context ↗ - Pepcid · Helped
Pepcid – supports GI-related histamine responses and seems to calm systemic flares.
In context ↗ - electrolytes (LMNT, Santa Cruz or DripDrop) · Helped
These help keep my blood volume, hydration, and muscle firing more stable.
In context ↗ - Low Dose Naltrexone (LDN) · Worse
LDN gave me a similar wired feeling and made my insomnia so much worse
In context ↗
Approaches: H1 antihistamines · H2 blockers · POTS medication · Pacing · Supplements
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 12 months 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 | After |
|---|---|---|---|
| 2020 | onset of overlapping symptoms that did not fit narcolepsy aloneI’ve been struggling with a whole constellation of symptoms ever sinceIn context ↗ | Not stated | |
| 2020/2021 | left their job in public education; exercise intolerance and crashes derailing them for days or weeksI had to leave public education and have had exercise intolerance since 2020/2021.In context ↗ | Moderate | |
| 2023 | hypersomnia reclassified as narcolepsy type 2 and its treatment helped in some waysTreatment helped in some ways, but it never explained why I continued to experience crashes, flares, and systemic dysfunctionIn context ↗ | Not stated | Stimulants (unspecified) |
| 2025-12-04 | stabilising and feeling more functional with extreme pacing, diet changes and supplementsI’m still recovering myself, but I can share what has helped me stabilize and feel more functional.In context ↗ | Mild | Pacing and the energy envelope |
| 2026-02-06 | still symptomatic; low-dose naltrexone worsened their insomnia and was stoppedLDN gave me a similar wired feeling and made my insomnia so much worseIn context ↗ | Mild | Low-dose naltrexone |
Adverse events
- “I have tried PT 6 different times and always end up worse.” In context ↗ Made symptoms worse
- Low-dose naltrexone“made my insomnia so much worse (which was one thing we were hoping it would alleviate)” In context ↗ Insomnia from treatment
- Low-dose naltrexone“LDN gave me a similar wired feeling” In context ↗ Side effects
- Low-dose naltrexone“I did feel more emotional/unstable as well but sleep deprivation also tends to do this.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
My primary symptoms are fascia tightness/pulling, chronic bracing, chronic fatigue, mcas, PEM and POTS/dysautonomia symptoms
In context ↗ - Brain fog
dizziness and heart rate issues, brain fog, sensory overload, inflammation, GI reactions, sleep disruption, temperature regulation issues
In context ↗ - POTS & dysautonomia
Dysautonomia / POTS-like patterns
In context ↗ - Mast cell (MCAS) & allergies
For my histamine, GI, and fascial symptoms, I take:
In context ↗ - Sleep problems
I also have narcolepsy coupled with insomnia from my chronic pain.
In context ↗ - Pain & fibromyalgia
pain that never made sense structurally
In context ↗ - Gut problems
inflammation, GI reactions, sleep disruption
In context ↗ - Light & noise sensitivity
brain fog, sensory overload, inflammation
In context ↗ - Muscle weakness
the spasms, the perceived weakness even when tests come back normal
In context ↗ - Neuropathy & tingling
the buzzing/tingling/“bugs crawling” sensations
In context ↗ - Temperature regulation
sleep disruption, temperature regulation issues
In context ↗
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