ME/CFS
Moderate → much betterIll 9 months before improving or writingNeeds ongoing treatment
Moderate ME/CFS with POTS and brain fog, now much better after pacing and aripiprazole
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 9 months
- Last post
- Feb 2026
In their words
- Condition: ME/CFS
I'm overall mild-to-moderate ME/CFS sufferer.
In context ↗ - At worst: Moderate
My severity was moderate an then improved to mild. ... When I was in worst state ... I did feel not as tired as my nervous system was very active, strong POTS, annoying fog - couldn't watch screen for too long.
In context ↗ - Now: Much better
Much better. But still sick. I would describe my current CFS as mild.
In context ↗ - Began after: nothing they could name
It just started very gradually.
Read from 63 of their posts and comments; links to the 32 this page draws on
Summary
Zephyr 95010 developed ME/CFS gradually around 2020, after earlier anxiety and back pain. He was moderate, able to walk only 4 km a day, with POTS, PEM, brain fog and sleep problems. Six months of pacing brought him to mild, and low-dose aripiprazole (1.25 mg) further eased brain fog and PEM. He later described himself as mild-to-moderate, not cured, with muscle pain and sleep problems persisting, and occasional crashes.
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What they tried
Also tried
Doxylamine· HelpedDramamine· HelpedIvabradine· Helpedresting / radical rest· HelpedMelatonin· HelpedLDN (low dose naltrexone)· No changehigh dose B1· No changeOmega3 fish oil· No changeMagnesium glycinate· No changevit C· No changevit B· No changetrigger point massages, heating and stretches· No changeacetyl-l-carnitine· WorseCaffeine· Worseweed· Worsecoffee· WorseL-Tyrosine· Much worseB12· Not saidvit D supplement· Not saidFolate· Not saidLion's Mane mushroom· Not saidcoenzyme q10· Not saidcold pack· Not said
Their words about each treatment
- Pacing · Helped a lot
I needed 6 months to get better from pacing. Illness severity was near moderate, but now it's mild
In context ↗ - LDN (low dose naltrexone) · No change
Low dose naltrexone didn't help
In context ↗ - low dose Abilify (aripiprazole) · Helped
It helped me tolerate more activity, and my brain fog completely disappeared, but over time.
In context ↗ - high dose B1 · No change
high dose B1 ... Unnoticeable difference
In context ↗ - B12 · Not said
B-12 maybe cleared my fog a little bit. Not sure.
In context ↗ - Omega3 fish oil · No change
Omega3 fish oil (probably average dose). Unnoticeable difference.
In context ↗ - vit D supplement · Not said
I was taking vit D supplement for quite some time
In context ↗ - Folate · Not said
Folate - did try both folic acid and methylfolate.
In context ↗ - Magnesium glycinate · No change
I personally took Magnesium glycinate 200mg 6 times per day ... No effect.
In context ↗ - vit C · No change
I personally took Magnesium glycinate 200mg 6 times per day, plus 1500mg vit C ... No effect.
In context ↗ - vit B · No change
plus 200 mg of vit B. No effect.
In context ↗ - acetyl-l-carnitine · Worse
Acetyl-l-carnitine personally made my nervous system and fog worse
In context ↗ - Lion's Mane mushroom · Not said
Vitamin B12 or Lion Mane shroom MAYBE helps, hard to tell if there was coincidences in how i felt.
In context ↗ - coenzyme q10 · Not said
I continued trying things like coenzyme q10, b vitamins etc.
In context ↗ - Doxylamine · Helped
doxylamine 15 mg tablet 30 min before sleep
In context ↗ - Dramamine · Helped
I tried Dramamine and it actually helped me not only with vertigo, but also with pressure in the head feeling!
In context ↗ - Ivabradine · Helped
Ivabradine may help me to tolerate POTS in terms of lightheadedness and too high of pulse. But it's hard to tell.
In context ↗ - resting / radical rest · Helped
But resting, wow, magically did. I feel almost no neck pain now only because i allow myself to rest from PC work.
In context ↗ - trigger point massages, heating and stretches · No change
everyday's trigger point massages, heating and stretches ... In 2 month, i got ZERO results
In context ↗ - cold pack · Not said
im just putting it on my forehead
In context ↗ - L-Tyrosine · Much worse
I tried L-Tyrosine plus Caffeine for energy and dopamine boost. Which caused me a 3-week nervous system related crash.
In context ↗ - Caffeine · Worse
I could tolerate x2 dose of Caffeine without L-Tyrosine JUST FINE.
In context ↗ - Melatonin · Helped
For me Melatonin helps a little
In context ↗ - weed · Worse
I tried weed with Abilify, I would say it's gonna make heart symptoms even worse.
In context ↗ - coffee · Worse
coffee was making my brain fog worse ... I started drinking coffee and now it's fine
In context ↗
Approaches: Other drugs and medicines · Pacing
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2020 | ME/CFS symptoms began graduallyThen i got my first CFS symptoms. The picture became clear: i have nervous system disorder, muscle pain (generalized), and Post-exertion malaise.In context ↗ | Moderate | |
| 2021-05 | improved with pacingI needed 6 months to get better from pacing. Illness severity was near moderate, but now it's mildIn context ↗ | Mild | Pacing and the energy envelope |
| 2021-09 | improved further on low-dose aripiprazoleI got quite of improvement after low dose abilify 1.25mg per day. Then just paced well and improved even more.In context ↗ | Mild | Low-dose Abilify / aripiprazole |
| 2022-01 | vertigo and head tension episode for 4+ daysrecently i got a random vertigo episode (4 days long and keep going), with feeling of tension in the headIn context ↗ | Mild | |
| 2023-09 | 2 weeks of PEM after trying a physical jobI recently had 2 weeks of PEM after I tried some real man jobIn context ↗ | Mild | |
| 2025 | 3-week nervous system crash after L-Tyrosine and caffeineWhich caused me a 3-week nervous system related crash.In context ↗ | Mild | |
| 2025-07 | stable again after restarting aripiprazoleMy severity was moderate an then improved to mild.In context ↗ | Mild | Low-dose Abilify / aripiprazole |
Adverse events
- Low-dose Abilify / aripiprazole“I got no side effects on day 1, but days 2-3 were difficult.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“I personally experienced worsened POTS for the first week after start” In context ↗ Made symptoms worse
- L-carnitine“Acetyl-l-carnitine personally made my nervous system and fog worse” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“when I tried it first time I thought it can make me worse, because POTS got worse as side effect.” In context ↗ Made symptoms worse
- L-carnitine“I got similar worsening (but mild) from acetyl-l-carnitine.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“This happened to me twice so I know it wasn't a coincidental worsening during LDA test for me.” In context ↗ Side effects
- Tyrosine, Caffeine and coffee“I tried L-Tyrosine plus Caffeine for energy and dopamine boost. Which caused me a 3-week nervous system related crash.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“after some adjustments that made POTS worse for 2 more weeks” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“it worsens POTS temporarily in my case.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“It made POTS worse temporarily.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migrainePOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
i have nervous system disorder, muscle pain (generalized), and Post-exertion malaise
In context ↗ - Brain fog
yet brain fog is SUPER easy to get and is pretty strong
In context ↗ - POTS & dysautonomia
The thing is i do have POTS, PEM, Sleep problems, fatigue etc
In context ↗ - Pain & fibromyalgia
My muscle pain didn't improve AT ALL.
In context ↗ - Headaches & migraine
Without LDA - once per 2-3 days.
In context ↗ - Anxiety & low mood
In my case i got anxiety disorder first. Out of nowhere.
In context ↗
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