ME/CFS for 27 years, barely able to work, a little better after sleep school
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 27 years
- Last post
- Dec 2024
In their words
- Condition: ME/CFS
I believe I have CFS, have been told by my doctor it's cfs
In context ↗ - At worst: Mild
Most of that time I was functional, barely but i could work
In context ↗ - Now: Somewhat better
It's been hell but I feel like I am finally making so tiny waves
In context ↗ - Says they never had: Brain fog
I have no brain fog
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
They had had CFS for 27 years, able to work only barely for most of that time, until a big crash and perimenopause about eight years ago made them worse. Their main symptoms were insomnia, adrenaline surges, a racing heart and tinnitus, with no brain fog; overdoing it stopped them sleeping. Eight days into a sleep school they had one crash night, then their best night's sleep, and felt they were making tiny waves of progress.
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What they tried
What they credit
Also tried
Their words about each treatment
- Mirtazapine · No change
I'm already on Mirtazapine and it doesn't do much.
In context ↗ - theanine · Helped
So i take theanine, melatonin, and progesterone at night and that helps
In context ↗ - sleep school · Helped
I'm 8 days into sleep school ... Last night I had the best nights sleep.
In context ↗ - ayo light glasses · Not said
I woke up and put my ayo light glasses on so i get some bright light in my eyes.
In context ↗ - organic intelligence · Not said
I'm also doing something called organic intelligence which is mindfullness based approach to trauma
In context ↗
Approaches: CBT & mindset
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 |
|---|---|
| about 27 years before Dec 2024 (≈1997) | CFS onset; functional but barely able to workMost of that time I was functional, barely but i could workIn context ↗ |
| 8 years ago (≈2016) | big crash plus perimenopause made her worsethen 8 years ago big crash plus perimenopause made things worseIn context ↗ |
| 2024-12-15 | 8 days into sleep school; a crash night, then her best night's sleepLast night I had the best nights sleep.In context ↗ |
Adverse events
- CBT and psychotherapy“I'm 8 days into sleep school, Friday night I had what I would consider a crash night waking up with racing heart, sweating and feeling like my limbs were burning.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Sleep problems
Insomnia is my main symptom
In context ↗ - Post-exertional malaise
if I do too much I just won't sleep and toss and turn all night and feel my heart racing
In context ↗ - Heart symptoms & palpitations
I only have the insomnia, some tinnitus and racy heart as pem
In context ↗ - Anxiety & low mood
I also get jolts, adrenaline surges or wake up just as I'm dropping off with a feeling of panic
In context ↗ - Temperature regulation
waking up with racing heart, sweating
In context ↗ - Neuropathy & tingling
feeling like my limbs were burning
In context ↗
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