ME/CFS
Severe → relapsed
ME/CFS: three years lying in bed in the dark, improved, then relapsed after a virus
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
almost exactly the same ME progression as you
In context ↗ - At worst: Severe
lying in bed in the dark for 3 yrs
In context ↗ - Now: Relapsed
has set me back to being in bed 22 hrs per day
In context ↗
Summary
The user, previously working full time, spent three years lying in bed in the dark, then worked hard to build up to being up four to six hours a day. A recent non-COVID virus set them back to 22 hours in bed; by June 2024 they could be upright only 10 minutes at a time, sleeping 20-22 hours a day, with POTS, severe post-exertional malaise, brain fog and vomiting, managed with pacing, rest, nicotine, THC and dexadrine.
Ask Miruvor AI
What they tried
Their words about each treatment
- pacing · Not said
I can only do very limited activity as I have really bad post exertional malaise so I pace, pace, pace
In context ↗ - rest · Not said
I can only be upright for about 10minutes at a time so rest, rest, rest
In context ↗ - nicotine · Helped
I also have unbelievable nausea, vomiting and GI issues and the best Tx we have for that is nicotine and THC
In context ↗ - THC · Helped
the best Tx we have for that is nicotine and THC
In context ↗ - dexadrine · Helped
If I need to be active I have dexadrine for that ... I also use a low dose when the brain fog gets bad
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| onset | onset of ME while working full timeWent from working full time, sitting on various boards and teaching online classesIn context ↗ |
| 3 yrs before June 2024 | lying in bed in the darklying in bed in the dark for 3 yrsIn context ↗ |
| before June 2024 | built up to being up 4-6 hours a dayhaving to work extremely hard to get to where I can be up for 4-6 hrs a dayIn context ↗ |
| June 2024 | non-COVID virus set them back to 22 hours in bedAlso recently had a virus, tho not covid, and it has set me back to being in bed 22 hrs per dayIn context ↗ |
| 2024-06-11 | upright only 10 minutes, sleeping 20-22 hours a dayI can only be upright for about 10minutes at a time so rest, rest, rest. I sleep ,20-22hrs a dayIn context ↗ |
Symptoms mentioned
Brain fogGut problemsLight & noise sensitivityPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I have really bad post exertional malaise so I pace, pace, pace
In context ↗ - POTS & dysautonomia
I also have developed POTS, and a vagal issue so I can only be upright for about 10minutes at a time
In context ↗ - Sleep problems
I sleep ,20-22hrs a day
In context ↗ - Gut problems
I also have unbelievable nausea, vomiting and GI issues
In context ↗ - Brain fog
I also use a low dose when the brain fog gets bad
In context ↗ - Light & noise sensitivity
lying in bed in the dark for 3 yrs
In context ↗