Mild ME/CFS with brain fog and crashes, somewhat better on naltrexone and D-ribose
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 10 years
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
I've had ME/CFS for almost a decade now
In context ↗ - At worst: Mild
Mine is a mild case
In context ↗ - Now: Somewhat better
Since then, I've managed to stop going full tilt downhill towards severe.
In context ↗
Read from 9 of their posts and comments; links to the 8 this page draws on
Summary
Orchid 89369 has had ME/CFS for almost a decade and calls it a mild case, with brain fog, tinnitus, sore throat, swollen lymph nodes and head pressure that build until they crash for a day or more. They say low-dose naltrexone (4.5 mg daily) and D-ribose are the two things they cannot function without, and that a powered wheelchair stopped them sliding toward severe. Their first flu shot caused a bad reaction; Covid vaccines did not.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Helped a lot
LDN is now one of the two things I cannot function without but I'm ok with it.
In context ↗ - D-Ribose · Helped
It's not as dramatic as going without the LDN but it's a noticeable difference.
In context ↗ - lower carb/keto style diet · Helped
when I go strict keto, my brain fog disappears but so does my energy
In context ↗ - rest / pacing · Helped
the only reason it's not worse is because I allowed myself to rest, stopped listening to everyone else and started listening to my body
In context ↗ - motorized wheelchair · Helped
I would never leave my bed if not for my wheelchair. I will never regret getting it.
In context ↗ - stretching · Not said
The most I do is stretch out the stiffness in the morning of whichever joint is groaning the most.
In context ↗ - Midol · Not said
I will be absolutely useless, and that's WITH coffee, Midol, Bayer Back and Body, and electrolytes.
In context ↗ - Flu vaccine · Not said
I know I reacted badly to the first flu shot I got, but the rest have been minor
In context ↗
Approaches: Pacing · 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 |
|---|---|---|
| ~2015 | ME/CFS beganI've had ME/CFS for almost a decade now ... Mine is a mild caseIn context ↗ | Mild |
| 2025-01-16 | bought a motorized wheelchair for outingsI finally saved up and got a motorized wheelchair and I am so happy I did.In context ↗ | Mild |
| 2026-04-07 | powered wheelchair for every outing; decline haltedSince then, I've managed to stop going full tilt downhill towards severe.In context ↗ | Mild |
| 2026-04-30 | still needs wheelchair to leave bed/house; rest days each periodI would never leave my bed if not for my wheelchair.In context ↗ | Mild |
Adverse events
- Keto and low-carb diets“when I go strict keto, my brain fog disappears but so does my energy” In context ↗ Made symptoms worse
- Flu vaccine“I know I reacted badly to the first flu shot I got, but the rest have been minor” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if I don't stop and #ActuallyRest I crash and end up sleeping for a whole day or more
In context ↗ - Brain fog
First my brain fog gets worse
In context ↗ - Tinnitus
the cicadas in my ears (tinnitus) get louder
In context ↗ - Flu-like symptoms
I get a sore throat and dry eyes, then lymph nodes swell up
In context ↗ - Headaches & migraine
pressure builds up in my neck and head
In context ↗ - Pain & fibromyalgia
stretch out the stiffness in the morning of whichever joint is groaning the most
In context ↗
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