ME/CFS with brain fog, fatigue and joint pain, now somewhat better with a medication
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 10 years
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
I have ME/CFS and hEDS amongst other things
In context ↗ - At worst: Moderate
I already had to drop out of school and never got any qualifications because of ME/CFS.
In context ↗ - Now: Somewhat better
I already had to drop out of school and never got any qualifications because of ME/CFS. I fought so hard to get here, to one of the top unis in the country.
In context ↗
Read from 10 of their posts and comments; links to the 6 this page draws on
Summary
They had had ME/CFS for about ten years, with brain fog, fatigue and joint pain, when a confirmed COVID infection in 2022 worsened all symptoms and added new ones. A second confirmed infection in late 2025 brought long-COVID symptoms back, disrupting sleep and causing anxiety while they studied at university. A medication they are still titrating caused nausea and nightmares for the first week after early dose rises, and still causes increased anxiety and a tired-but-wired feeling after increases, but was helping.
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What they tried
What they credit
Also tried
Their words about each treatment
- cutting out gluten · Helped
I already cut out gluten a few years ago because it made me really sick
In context ↗ - cutting out refined sugar · Helped
I eat very little refined sugar because it gives me headaches
In context ↗ - keto · No change
I've been on the diet for 2 weeks now, and I've noticed essentially zero difference
In context ↗ - electrolytes · Not said
I've been adding electrolytes to my drinks from the start so I think I'm fine on that front
In context ↗ - covid vaccine · Helped
for my own body they seem to help
In context ↗ - LDN · Helped
these side effects are more than manageable, and it's definitely helping me!
In context ↗
Approaches: Vaccination
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | ME/CFS began in childhood / about ten years before 2025I've had ME/CFS for 10 years ... I've been fighting with my body since I was a childIn context ↗ | Moderate | |
| 2022 | confirmed COVID infection worsened all symptoms and added new ones; had to drop to part-time studyLast time, it worsened all my symptoms and gave me new onesIn context ↗ | Mild | |
| 2025-11 | second confirmed COVID infection, long-COVID symptoms againNow the same is happening again.In context ↗ | Mild | |
| 2025-12 | titrating low-dose naltrexone, which was helpingthese side effects are more than manageable, and it's definitely helping me!In context ↗ | Mild | Low-dose naltrexone |
Adverse events
- Keto and low-carb diets“my muscles feel ever so slightly more tired ... I'm the slightest bit more physically fatigued” Made symptoms worse
- Keto and low-carb diets“I didn't even get keto flu except some very mild leg cramps on day 4.” In context ↗ Side effects
- Keto and low-carb diets“it does make me feel sick ... I don't have any appetite so making myself eat doesn't feel great” Gut side effects
- Low-dose naltrexone“It gave me nausea and nightmares for the first week each time I upped the dose, but that stopped at around 2mg.” In context ↗ Gut side effects
- Low-dose naltrexone“It gave me nausea and nightmares for the first week each time I upped the dose, but that stopped at around 2mg.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“still get increased anxiety/tired but wired feeling for a week when I increase” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“still get increased anxiety/tired but wired feeling for a week when I increase” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Brain fog
my brain fog has got really bad again
In context ↗ - Sleep problems
the LC is messing up my sleep
In context ↗ - Anxiety & low mood
making me anxious and I feel like I'm going insane
In context ↗ - Pain & fibromyalgia
to alleviate symptoms such as brain fog, fatigue and joint pain
In context ↗ - Headaches & migraine
I eat very little refined sugar because it gives me headaches
In context ↗
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