ME/CFS
Mild → no benefitIll for 6.5 years
ME/CFS with persistent brain fog and fatigue, antihistamines gave no relief
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 6.5 years
- Last post
- Oct 2023
In their words
- Condition: ME/CFS
I have had suspected CFS since I had a big bad autistic burnout in 2017
In context ↗ - At worst: Mild
Still get the occasional brain fog though.
In context ↗ - Now: No benefit
I've had freezing cold extremities and brain fog ever since.
In context ↗ - Began after: stress or burnout
I have had suspected CFS since I had a big bad autistic burnout in 2017
In context ↗
Read from 22 of their posts and comments; links to the 12 this page draws on
Summary
After an autistic burnout in 2017, a Scottish Reddit user had suspected CFS, later recorded as post-viral syndrome/long COVID following a suspected March 2020 infection that left persistent brain fog and freezing extremities. A 2019 wisdom tooth extraction was severe. Antihistamines gave no relief from fatigue or brain fog, while cutting carbs and Vicks inhaler sticks reduced sinus headaches. In 2023 they were taking slow-release propranolol.
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What they tried
Also tried
Their words about each treatment
- CBT · Not said
pretty much the only thing about CBT that I took away from it - comparatives, with our past selves or other people, are really awful and draining
In context ↗ - Johnson and Johnson vaccine trial · Not said
I took part in the trial for this one - the first jag I felt nothing, the second I had a headache and a day or two of lethargy - to be honest I am not sure if I got the vaccine or the placebo yet.
In context ↗ - antihistamines · Helped
with antihistamines there's no difference to fatigue or brain fog, I'm just not as snotty, sniffy, or sneezy
In context ↗ - Vicks · Helped
Slathering vicks all over did seem to really help though.
In context ↗ - Vicks inhaler stick · Helped
this past year I've used the vicks inhaler stick whenever I've felt that pressure start and so far I've not had a bad sinus headache this year!
In context ↗ - reducing carbs · Helped
getting the wisdom tooth out and reducing carbs has dramatically reduced the frequency
In context ↗ - wisdom tooth out · Helped
Mine were triggered by either tmj or an impacted wisdom tooth - and carbs, getting the wisdom tooth out and reducing carbs has dramatically reduced the frequency.
In context ↗ - propranolol · Not said
I use 80mg slow release propranolol and I find the body battery / hrv / stress very useful. Just that my usual heart-rate is about 55.
In context ↗ - irlen lenses · Helped
my actual irlen colour is hard to find as a lense, but rose seems to work
In context ↗
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. 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 |
|---|---|---|
| 2017 | suspected CFS after autistic burnoutI have had suspected CFS since I had a big bad autistic burnout in 2017In context ↗ | Mild |
| 2019 | wisdom tooth extraction, almost killed mehaving a wisdom tooth out almost killed me in 2019In context ↗ | Not stated |
| March 2020 | suspected COVID; brain fog and cold extremities sincewe had it in March 2020 ... I've had freezing cold extremities and brain fog ever sinceIn context ↗ | Mild |
| 2023-10-04 | still mildly affected; cold extremities milder, uses tinted lenses for light sensitivityi still get cold extremities, but it doesn't seem as severe as last yearIn context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“the first jag I felt nothing, the second I had a headache and a day or two of lethargy” In context ↗ Side effects
Symptoms mentioned
Brain fogHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesSleep problemsTemperature regulation
Their words about their symptoms
- Brain fog
I've had freezing cold extremities and brain fog ever since.
In context ↗ - Temperature regulation
i still get cold extremities, but it doesn't seem as severe as last year
In context ↗ - Headaches & migraine
I get sinus headaches constantly
In context ↗ - Mast cell (MCAS) & allergies
I have really bad annual allergies
In context ↗ - Sleep problems
I have sleep issues
In context ↗ - Light & noise sensitivity
I have a few pairs of coloured lense specs I use
In context ↗