Bedbound with ME/CFS, improved then relapsed; cortisone gave 20%
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 3 years
- Last post
- Apr 2025
In their words
- Condition: ME/CFS
I have had ME/CFS for a year now
In context ↗ - At worst: Very severe
About a year ago I was not able to swallow or speak. I communicated with my parents using signs.
In context ↗ - Now: Relapsed
I've had a recovery to severe which lasted for about 3 months now. But now my symptoms slowly deteriorate
In context ↗ - Began after: nothing they could name
i didn't have a bad infection when the fatigue started
Read from 17 of their posts and comments; links to the 12 this page draws on
Summary
Lagoon 62632 fell ill in mid-2022 and was bedbound within months; in late 2023 they could not swallow and for a short time could not speak. They recovered to severe early in 2024, then deteriorated again by late March 2024 and were relapsing in a nursing home by late 2024. Cortisone gave only about 20% improvement and LDN was stopped. By April 2025 they said they were better.
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What they tried
What they credit
Also tried
Their words about each treatment
- cannabis · Worse
I'm severe and I don't feel well now after trying it, it makes me too active and too uneasy to rest well.
In context ↗ - cortison · Helped
I have not recovered with cortison, I only improved by 20% or so.
In context ↗ - antibiotics · No change
I've got lyme disease and other small infections. However, ten days of antibiotics so far have made no big difference.
In context ↗ - pacing · No change
I did try it pretty strictly for some time, though.
In context ↗ - Fresubin (high-calorie drinks) · Helped
It helps me a lot when I'm to weak to chew or eat.
In context ↗ - low carb/ ketogenic diet · Not said
I've started slowly and I think I sometimes get low blood sugar as a result.
In context ↗ - LDN · Worse
In February, I started taking LDN and slowly increased the dosage up to 1.5 mg. Two weeks ago, I noticed that I was becoming hyperactive and sweating a lot.
In context ↗ - Mestinon · Not said
My doctor prescribes me Mestinon to strengthen my muscles. Has barely any side effects too.
In context ↗ - stretching and massaging · No change
I started to do some stretching and massaging but can't see any improvement on the pain and tinnitus yet.
In context ↗
Approaches: Hormones & thyroid
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. The chart starts 6 months after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| 2022-05 | fell ill with fatigue and other symptomsI've been sick for half a yearIn context ↗ | Not stated |
| 2022-11 | completely bedbound for two monthscompletely bedbound for the last two monthsIn context ↗ | Very severe |
| late 2023 | could not swallow or speakI was not able to swallow or speakIn context ↗ | Very severe |
| early 2024 | major recovery, could eat and speak againThen I had a major recovery and I could eat and speak againIn context ↗ | Severe |
| 2024-03-26 | symptoms slowly deteriorating after three months of recoverynow my symptoms slowly deteriorateIn context ↗ | Severe |
| 2024-11 | relapsing in a nursing home, speech and listening increasingly fatiguingFor roughly two months now I seem to be relapsingIn context ↗ | Severe |
| 2025-04-25 | reported being betterI'm better now!In context ↗ | Severe |
Adverse events
- Cannabis (THC, marijuana)“I don't feel well now after trying it, it makes me too active and too uneasy to rest well.” In context ↗ Side effects
- Low-dose naltrexone“In February, I started taking LDN and slowly increased the dosage up to 1.5 mg. Two weeks ago, I noticed that I was becoming hyperactive and sweating a lot.” In context ↗ Side effects
- Low-dose naltrexone“As a result, I discontinued LDN a week ago. Since then, I feel like my condition is slowly worsening. I constantly feel warm (especially my head and hands) and exhausted.” In context ↗ Made symptoms worse
- Keto and low-carb diets“I've started slowly and I think I sometimes get low blood sugar as a result.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
my symptoms usually worsen quickly after exertion
In context ↗ - Brain fog
mild cognitive issues
In context ↗ - Pain & fibromyalgia
I mostly get general fatigue, muscle weakness or muscle pain
In context ↗ - Heart symptoms & palpitations
raised heart rate/ heart racing
In context ↗ - Muscle weakness
muscle weakness
In context ↗ - Tinnitus
I also have a tinnitus
In context ↗ - Temperature regulation
I constantly feel warm (especially my head and hands)
In context ↗ - Light & noise sensitivity
I need earplugs to avoid crashing from noise
In context ↗
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