Housebound with ME/CFS; LDN eased symptoms, then relapsed to severe
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Nov 2024
In their words
- Condition: ME/CFS
but I realize that I can never do it with mecfs, even when very mild
In context ↗ - At worst: Severe
Nowadays im severe and have severe fatigue 24/7.
In context ↗ - Now: Relapsed
I went from being able to watch tv for max 15 minutes ... Nowadays im severe and have severe fatigue 24/7.
- Began after: COVID
I had covid in 2020.
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Otter 51712 fell ill with COVID-19 in 2020 and became housebound after one tennis lesson while mild; at around 16 months they could not play video games or watch screens, and before LDN they could not watch a screen for 15 minutes. Low-dose naltrexone, on the third attempt and titrated by 0.1 mg over a year to 4 mg, eased PEM, brain fog and sound and light sensitivity, and by January 2024 they could play video games 3-4 hours daily with breaks. By November 2024 they described themselves as severe, with severe fatigue 24/7.
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What they tried
What they credit
Their words about each treatment
- ldn · Helped
It helped me a bit. ... Sound and light sensitivity and brainfog are a lot better.
In context ↗ - gym exercises · Worse
Before that I tried to go to the gym. I could do really simple exercises on the mat.
In context ↗ - 1 tennis lesson · Much worse
When I was mild I tried 1 tennis lesson. I did it really carefully and didnt run but since then I am housebound.
In context ↗ - pacing · Helped
even my sleep was good if i paced really well
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2020 | COVID-19 infection, onset of ME/CFS while mildI had covid in 2020. ... The first year i had no to little fatigue outside pem.In context ↗ | Mild | |
| late 2021 | became housebound and lost all function after one tennis lesson while mild; could not watch a screenAround 16 months I was not able to play video games or watch series/movies/screen time. ... since then I am housebound. That is 2,5 years ago. | Severe | |
| 2024-01-15 | cognitive improvement, could play video games 3-4 hours a day with breaks and shower weeklyMostly my cognitive issues are better. I thank it mostly to ldn and other medication.In context ↗ | Severe | Low-dose naltrexone |
| 2024-11-02 | still severe with constant fatigue, though resting lessNowadays im severe and have severe fatigue 24/7.In context ↗ | Severe |
Adverse events
- Low-dose naltrexone“I started with 0,1 and had a lot of side effects and stopped.” In context ↗ Side effects
- Low-dose naltrexone“Every time I increased with 0,1mg and had side effects for a week.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
In my case it lessens the severity of pem
In context ↗ - Brain fog
Sound and light sensitivity and brainfog are a lot better.
In context ↗ - Headaches & migraine
That would instantly give me extreme nauseau and headache a couple months ago.
In context ↗
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