Daily crashing and severe light sensitivity in ME/CFS, much better after retinyl acetate
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Apr 2022
In their words
- At worst: Moderate
I used to completely crash at around midday/3 pm.
In context ↗ - Now: Much better
I can finally walk higher tempos and even do jogging ... Now I can pull off studying up to late 10pm without any feverlike headaches.
In context ↗
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
A man with ME/CFS described severe light sensitivity, night blindness, dry eyes and lips, fever-like fatigue, poor sleep, gut problems and breathlessness, crashing daily around midday. Loratadine 10 mg eased his feverishness and sleep, and two weeks of high-dose retinyl acetate let him jog, walk faster and study into the evening. Whole-body pain and brain fog remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- tea (peppermint/ginger/rosehip/lemon grass/stinging nettle) · Helped
If I don't drink about 30 bags of tea per day ... I get the cold/flu on a monthly basis
In context ↗ - zinc · Helped
If I don't drink about 30 bags of tea per day ... with heavy zinc and vit C supplementation, I get the cold/flu on a monthly basis
In context ↗ - loratadine · Helped
Boom - the turbinates have finally become flaccid ... a good chunk of the feverlike fatigue. And sleep has improved massively
In context ↗ - inferior turbinate surgery · No change
a surgery I had back then from which the turbinates regenerated completely would have been entirely pointless
In context ↗ - retinyl acetate · Helped
I can finally walk higher tempos and even do jogging, have less gut issues, no more being out of breath or lactic burning after 4 stairs
In context ↗ - PKU diet · Not said
likely due to having abandoned my PKU diet and having digestive absorption issues ever since
In context ↗ - exercise · No change
these were the earliest attempts until it was clear that it wont do shit
In context ↗
Approaches: Diet · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. 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 |
|---|---|---|---|
| — | ongoing illness with fatigue, light sensitivity and drynessAside from the fatigue, being very sensitive to light to the point of hurting the eyesIn context ↗ | Moderate | |
| 2022-01-13 | first loratadine capsule eased feverishness and sleepAnd so did a good chunk of the feverlike fatigue. And sleep has improved massively. And m, body isn't as hot anymore.In context ↗ | Mild | Loratadine (Claritin) |
| 2022-03-31 | after two weeks of high-dose retinyl acetate could jog and study lateI can finally walk higher tempos and even do jogging, have less gut issues, no more being out of breathIn context ↗ | Mild | |
| 2022-04-29 | still limited by whole-body pain and brain fog; exercise had not helpedmy chronic whole-body cramps, spasms and pains ... did not vanishIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Vision problems
terrible night blindness which renders the existence of contrasts worthless
In context ↗ - Light & noise sensitivity
being very sensitive to light to the point of hurting the eyes
In context ↗ - Sleep problems
sleep has improved massively
In context ↗ - Flu-like symptoms
if I don't drink about 30 bags of tea per day ... I get the cold/flu on a monthly basis
In context ↗ - Gut problems
have less gut issues
In context ↗ - Brain fog
which are my major source of brainfog did not vanish
In context ↗ - Pain & fibromyalgia
my chronic whole-body cramps, spasms and pains
In context ↗
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