ME/CFS
Severe → somewhat betterIll 7 years before improving or writing
Bedridden most of seven years with ME/CFS, now somewhat better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 7 years
- Last post
- Jun 2025
In their words
- Condition: ME/CFS
I have had CFS for 7 years, and to be honest, every day is hell.
In context ↗ - At worst: Severe
Because of that, I was bedridden and shut-in for almost seven years.
In context ↗ - Now: Somewhat better
some medicines have started to work for me, and I am now able to move around a little
In context ↗ - Began after: stress or burnout
I developed CFS after long-term stress from the age of 15 to 17.
- Says they never had: Headaches & migraine
I have never had a headache more than five times in my life.
Read from 64 of their posts and comments; links to the 35 this page draws on
Summary
A Japanese university student who developed brain fog and chronic fatigue at 17 after chronic stress and spent most of the next seven years bedridden. Tricyclic antidepressants relieved his symptoms but were stopped for QT prolongation and tachycardia; an SNRI helped at first but lost effect. He remained severely limited.
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What they tried
What they credit
Also tried
Propofol anesthesia· Helped a lotCymbalta· Helped · wore offantihistamines· HelpedLDN· Helped · wore offPiracetam· HelpedTrazodone· Helped · wore offDayvigo· HelpedGuanfacine· HelpedZ drugs· Helpedmilnacipran· Helped · wore offDesvenlafaxine· Helped · wore offsupplements and Chinese medicine· Helped · wore offremoved mold from my room· Helpedcaffeine· HelpedTrintellix· No changeLDA· No changeMestinon· No changePregabalin· No changegabapentin· No changeAgmatine· No changemethylphenidate· Worsepemoline· Worsebupropion (Wellbutrin)· Worsefluvoxamine· Worsevitamin B12· Worsevitamin C· WorseMirtazapine· WorseAgomelatine· Worsecyproheptadine· Not saidSAMe· Not said
Their words about each treatment
- methylphenidate · Worse
Methylphenidate and bupropion → ADHD significantly worsens
In context ↗ - pemoline · Worse
Both methylphenidate and pemolin worsened my hyperactivity and manic state.
In context ↗ - bupropion (Wellbutrin) · Worse
When I take bupropion (Wellbutrin), my ADHD gets significantly worse
In context ↗ - Clonazepam · Helped
Clonazepan, Nortriptyline, Cymbalta → ADHD and brain fog significantly disappear
In context ↗ - Nortriptyline · Helped a lot
The most effective drug I've ever taken is Nortriptyline
In context ↗ - Cymbalta · Helped
Cymbalta worked dramatically at first, but it stopped working completely after 2 months.
In context ↗ - Trintellix · No change
Trintellix and other supplementary medications I was using were almost ineffective
In context ↗ - antihistamines · Helped
I used antihistamines and removed mold from my room, and my sleep duration increased.
In context ↗ - fluvoxamine · Worse
I only tried fluvoxamine 12.5mg for one day, and it made me too sleepy at that time, so I stopped.
In context ↗ - LDN · Helped
LDN was only effective at first.
In context ↗ - Piracetam · Helped
I took 3g of Piracetam for the first time today, and my short-term memory, procrastination, and creativity have improved significantly.
In context ↗ - vitamin B12 · Worse
when I took vitamin B12, I started having tinnitus and hallucinations
In context ↗ - vitamin C · Worse
when I took vitamin C, my fatigue worsened
In context ↗ - Trazodone · Helped
I am already taking Trazodon, and although it worked at first, I don't feel like it's working very well now.
In context ↗ - Dayvigo · Helped
I was able to sleep 5-6 hours with benzo, Trazodone, and Dayvigo.
In context ↗ - Mirtazapine · Worse
Mirtazapine (feeling sleepy even at the lowest dose, general fatigue different from drowsiness, ALT increased 3-4 times)
In context ↗ - LDA · No change
I have already tried LDA and stimulants, but they were not effective for me
In context ↗ - Mestinon · No change
LDN didn't work for me at first, and neither did Mestinon
In context ↗ - Pregabalin · No change
I have tried Pregabalin, but it didn't work very well.
In context ↗ - gabapentin · No change
I was taking 300mg of gabapentin and it didn't really help.
In context ↗ - Guanfacine · Helped
when I took 3 mg of Guanfacine, I felt like I was sleeping more deeply than usual.
In context ↗ - cyproheptadine · Not said
Z drugs, clonazepam, dayvigo, trazodone, and cyproheptadine
In context ↗ - Z drugs · Helped
I use Z drugs and have no trouble falling asleep, but I wake up in the middle of the night
In context ↗ - Lamotrigine · Helped
Lamotrigine and Clonazepam improve my CFS＋ADHD
In context ↗ - Imipramine · Helped
Imipramine, Nortriptyline, and clomipramine all worked for me
In context ↗ - amoxapine · Helped
Especially Nortriptyline and amoxapine
In context ↗ - milnacipran · Helped
The next most effective drug is milnacipran.
In context ↗ - Desvenlafaxine · Helped
SNRIs in general (Cymbalta, Desvenlafaxine, milnacipran)
In context ↗ - Agomelatine · Worse
Agomelatine Task processing ability improved, but general fatigue was terrible
In context ↗ - Propofol anesthesia · Helped a lot
I happened to receive Prepofol anesthesia for a colonoscopy, and all my symptoms improved dramatically over the next few days.
In context ↗ - Prozac · Helped
Prozac is an exception, and Prozac is the only one that has been consistently very effective.
In context ↗ - Atomoxetine · Helped
In my case, Atomoxetine worked for my CFS.
In context ↗ - SAMe · Not said
I'm taking SAMe, but would that help in this case?
In context ↗ - Rybelsus · Helped a lot
I take 3mg of Rybelsus every day, and honestly, it has worked better than any other ADHD medication I've ever taken.
In context ↗ - Agmatine · No change
Agmatine had no effect at all
In context ↗ - Opipramol · Helped a lot
I tried a rare antidepressant called Opipramol and it worked wonders for cfs＋Brain pressure
In context ↗ - supplements and Chinese medicine · Helped
it only gets better temporarily, and after a few weeks it goes back to normal
In context ↗ - caffeine · Helped
When I take caffeine, the pressure on my brain is relieved
In context ↗
Approaches: GLP-1 drugs · SSRIs · Benzodiazepines · Other drugs and medicines · Tricyclic antidepressants
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 6.9 years after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2017 | brain fog, chronic fatigue, acne, dry eyes and night waking began at age 17, before COVIDThis brain fog and chronic fatigue started when I was about 17 years oldIn context ↗ | Not stated |
| 2024-11 | bedridden at home, unable to walk 100 m to the supermarketI spent the years between 17 and 24 bedridden due to fatigue and pressure on my brainIn context ↗ | Severe |
| 2024 | SNRI Cymbalta stopped working after two months following a crashIt worked dramatically for the first two months, but one day I moved too much and crashed, and it stopped working from that day on.In context ↗ | Severe |
| 2024-12 | tricyclic antidepressants cleared fatigue and brain fog but QT prolongation forced stoppingwhen I take tricyclic antidepressants, the fatigue disappears all at onceIn context ↗ | Mild |
| 2025-01 | chest pressure on nortriptyline, ambulance to hospital, drug stoppedI experienced symptoms similar to a heart attackIn context ↗ | Severe |
| 2025-02 | all symptoms improved dramatically for a few days after propofol anaesthesia for a colonoscopyall my symptoms improved dramatically over the next few daysIn context ↗ | Not stated |
| 2025-05 | Prozac consistently effective and erectile dysfunction curedProzac is an exception, and Prozac is the only one that has been consistently very effectiveIn context ↗ | Moderate |
| 2025-05 | Opipramol had a strong effect on ADHD and CFS/brain pressure but raised blood pressureI tried Opipramol, which acts on Sigma-1, and it had a strong effect on both ADHD and CFSIn context ↗ | Moderate |
| 2025-06 | some medicines working, able to move around a little after years in bedsome medicines have started to work for me, and I am now able to move around a littleIn context ↗ | Moderate |
Adverse events
- Methylphenidate (Ritalin, Concerta)“Methylphenidate and bupropion → ADHD significantly worsens” In context ↗ Made symptoms worse
- Bupropion (Wellbutrin)“Methylphenidate and bupropion → ADHD significantly worsens” In context ↗ Made symptoms worse
- Nortriptyline (Pamelor)“I am very sensitive to drugs and even 10mg causes QT prolongation” In context ↗ Heart rhythm problems
- Fluvoxamine (Luvox)“I only tried fluvoxamine 12.5mg for one day, and it made me too sleepy at that time, so I stopped” In context ↗ Side effects
- Vitamin B12“when I took vitamin B12, I started having tinnitus and hallucinations” In context ↗ Other
- Vitamin C“when I took vitamin C, my fatigue worsened” In context ↗ Made symptoms worse
- Mirtazapine (Remeron)“If I take Mirtazapine, I can sleep for about 4 hours, but the next day I feel sleepy and unable to move all day” In context ↗ Side effects
- Bupropion (Wellbutrin), Nortriptyline (Pamelor), Duloxetine (Cymbalta), Vortioxetine (Trintellix), Fluvoxamine (Luvox), Trazodone (Desyrel), Mirtazapine (Remeron), Imipramine (Tofranil), Clomipramine (Anafranil), Antidepressants (unspecified), Milnacipran (Savella), Desvenlafaxine (Pristiq), Agomelatine (Valdoxan), Fluoxetine (Prozac), Opipramol“when I take tricyclic antidepressants, my QT is abnormally long” In context ↗ Heart rhythm problems
- Bupropion (Wellbutrin), Nortriptyline (Pamelor), Duloxetine (Cymbalta), Vortioxetine (Trintellix), Fluvoxamine (Luvox), Trazodone (Desyrel), Mirtazapine (Remeron), Imipramine (Tofranil), Clomipramine (Anafranil), Antidepressants (unspecified), Milnacipran (Savella), Desvenlafaxine (Pristiq), Agomelatine (Valdoxan), Fluoxetine (Prozac), Opipramol“My resting heart rate goes above 100 just by taking 10 mg of maprotiline” In context ↗ Heart rhythm problems
- Bupropion (Wellbutrin), Nortriptyline (Pamelor), Duloxetine (Cymbalta), Vortioxetine (Trintellix), Fluvoxamine (Luvox), Trazodone (Desyrel), Mirtazapine (Remeron), Imipramine (Tofranil), Clomipramine (Anafranil), Antidepressants (unspecified), Milnacipran (Savella), Desvenlafaxine (Pristiq), Agomelatine (Valdoxan), Fluoxetine (Prozac), Opipramol“Even with the smallest dose of tricyclic antidepressants, my heart rate goes up to 110-120” In context ↗ Heart rhythm problems
- Imipramine (Tofranil)“I have heart problems and want to continue Imipramine, but I can't continue with even just 10 mg” In context ↗ Heart rhythm problems
- Bupropion (Wellbutrin), Nortriptyline (Pamelor), Duloxetine (Cymbalta), Vortioxetine (Trintellix), Fluvoxamine (Luvox), Trazodone (Desyrel), Mirtazapine (Remeron), Imipramine (Tofranil), Clomipramine (Anafranil), Antidepressants (unspecified), Milnacipran (Savella), Desvenlafaxine (Pristiq), Agomelatine (Valdoxan), Fluoxetine (Prozac), Opipramol“even the smallest dose has too many side effects on my heart and my liver values rise abnormally, so I can't continue taking them” In context ↗ Liver or kidney problems
- Nortriptyline (Pamelor)“even at just 5mg, I get QT prolongation and side effects on my heart, so I can't continue” In context ↗ Heart rhythm problems
- Nortriptyline (Pamelor)“Also, I wake up in the middle of the night after 2 to 3 hours, which doesn't happen with imipramine” In context ↗ Insomnia from treatment
- Nortriptyline (Pamelor)“I experienced symptoms similar to a heart attack ... and was taken to the hospital by ambulance” In context ↗ ER visit
- Nortriptyline (Pamelor)“even at 5mg to 10mg, my QTc extends to 0.450 to 0.500” In context ↗ Heart rhythm problems
- Mirtazapine (Remeron)“Mirtazapine (feeling sleepy even at the lowest dose, general fatigue different from drowsiness, ALT increased 3-4 times)” In context ↗ Side effects
- Mirtazapine (Remeron)“Mirtazapine (feeling sleepy even at the lowest dose, general fatigue different from drowsiness, ALT increased 3-4 times)” In context ↗ Liver or kidney problems
- Agomelatine (Valdoxan)“Task processing ability improved, but general fatigue was terrible” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“Even small amounts increase impulsivity, impair judgment, and lead to manic states. ... Both bupropion and methylphenidate had the worst effects” In context ↗ Mood or psychiatric effects
- Atomoxetine (Strattera)“atomoxetine caused insomnia and I could only sleep 1-2 hours a day” In context ↗ Insomnia from treatment
- Fluoxetine (Prozac)“Taking SSRIs (Prozac) or Strattera makes the waking worse” In context ↗ Insomnia from treatment
- Semaglutide (Ozempic, Wegovy)“my pulse rate, which is usually 80-90, increases significantly to 100-130” In context ↗ Heart rhythm problems
- Semaglutide (Ozempic, Wegovy)“Also, I feel nauseous when I take Rybelsus” In context ↗ Gut side effects
- Semaglutide (Ozempic, Wegovy)“my blood pressure went up to 65/55, which I had never seen before, and I felt horrible” In context ↗ Low blood pressure or fainting
- Semaglutide (Ozempic, Wegovy)“But I couldn't continue because it made my insomnia worse” In context ↗ Insomnia from treatment
- Duloxetine (Cymbalta)“In fact, now when I take it, I feel lethargic and anhedonic” In context ↗ Mood or psychiatric effects
- Opipramol“when I take Opipramol, even a small amount makes my blood pressure very high” In context ↗ Other
Symptoms mentioned
Brain fogHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Brain fog
I am a man in my 20s who suffers from brain fog and ADHD.
In context ↗ - Post-exertional malaise
I've had PEM and crashes many times, so I'm pretty sure I have an element of cfs.
In context ↗ - Sleep problems
I always wake up in the middle of the night after 3-4 hours.
In context ↗ - Heart symptoms & palpitations
I also have tachycardia and my resting heart rate is 90 to 120
In context ↗ - Vision problems
Other symptoms include dry eyes and skin, erectile dysfunction, vision problems
In context ↗ - POTS & dysautonomia
I have CFS and autonomic nervous system disorder, and have had insomnia for a long time.
In context ↗ - Mast cell (MCAS) & allergies
I also seem to be sensitive to chemicals; once when someone came into my room wearing strongly scented clothing, my brain fog got much worse the next day.
In context ↗ - Temperature regulation
when I wake up, my whole body is hot even though it's cold outside, and I feel a little hot
In context ↗ - Pain & fibromyalgia
my symptoms are a constant physical pressure on my brain, stiff neck, easy fatigue
In context ↗
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