ME/CFS
Moderate → somewhat better
Sleeping 12 or more hours a day, now somewhat better with stimulants
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2023
In their words
- Condition: ME/CFS
I definitely get pem but like to think I’m decent at pacing.
In context ↗ - At worst: Moderate
I still only have about 4 functioning hours.
In context ↗ - Now: Somewhat better
Stimulants worked brilliantly for me and now not so much.
In context ↗
Summary
Sandpiper 77182 has POTS, ankylosing spondylitis and fibromyalgia, gets post-exertional malaise, and before stimulants slept 12 or more hours a day. Stimulants worked brilliantly at first but later stopped helping much, and they still have only about four functioning hours a day. Low-dose naltrexone did nothing for fatigue and made them worse, and coming off it may have triggered a pain flare and they slept 13+ hours.
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What they tried
Their words about each treatment
- stimulants · Helped
Stimulants worked brilliantly for me and now not so much.
In context ↗ - LDN · Worse
It did nothing for my fatigue and actually made me worse.
In context ↗ - pacing · Not said
I definitely get pem but like to think I’m decent at pacing.
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 | After |
|---|---|---|
| — | Ill and sleeping 12+ hours a day before stimulantsBefore I was on stimulants I slept 12+ hours a dayIn context ↗ | |
| — | Stimulants worked brilliantly, later stopped helpingStimulants worked brilliantly for me and now not so much.In context ↗ | Stimulants (unspecified) |
| 2023-12-11 | Went off LDN, slept 13+ hours and had a pain flareI did sleep 13+ hours yesterday as I went off my LDN and that may have triggered a bit of a pain flare up.In context ↗ | |
| 2023-12-11 | Only about four functioning hours a dayI still only have about 4 functioning hoursIn context ↗ |
Adverse events
- Low-dose naltrexone“It did nothing for my fatigue and actually made me worse.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I did sleep 13+ hours yesterday as I went off my LDN and that may have triggered a bit of a pain flare up.” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I definitely get pem
In context ↗ - POTS & dysautonomia
I have POTS, ankylosing spondylitis and fibromyalgia
In context ↗ - Sleep problems
Before I was on stimulants I slept 12+ hours a day
In context ↗