ME/CFS
Very severe → somewhat betterNeeds ongoing treatment
Bedbound and very severe with ME/CFS, partly better on high-dose lorazepam
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I still have ME and sometimes PEM.
In context ↗ - At worst: Very severe
Half a year, very severe. No lights, no sounds, no talking, bedbound, barely able to move etc.
In context ↗ - Now: Somewhat better
I'm still sick, but I'm not in the constant fight or flight anymore. I can even walk some steps, can call people, talk, eat.
In context ↗ - Says they never had: Anxiety & low mood
I'm not even depressed.
Read from 103 of their posts and comments; links to the 36 this page draws on
Summary
German woman with ME/CFS that began moderate and worsened over time. A tiny dose of low-dose Abilify (0.01-0.02 mg) left her very severe for almost a year; for half a year she was bedbound, barely able to move, with no talking and no light. High-dose lorazepam in hospital brought back talking, seeing, eating and walking a few steps; she stays on 4 mg daily and any faster dose drop quickly returns her symptoms.
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What they tried
What they credit
Also tried
magnesium· Helpedmastcell stabilisation· HelpedVagus nerve stimulation (solar plexus / sole of foot)· Helped · wore offsugarfree, glutenfree· Helpedsugarfree, glutenfree· Helpedlow histamine· Helpedlow glutamate diet· Helpednap training· HelpedFortimel· HelpedLDN· No changeh1 antagonists· No changemelatonin· No changeMCAS meds· No changehard resting· No changenicotine· Worsemestinon· Worsemeditation· WorseLDA (low dose abilify)· Much worsepacing· Not said
Their words about each treatment
- LDN · No change
I didn't benefit from LDN nor from Mestinon but took it or a long time.
In context ↗ - nicotine · Worse
I tried both and both overstimulated me :/.
In context ↗ - mestinon · Worse
low dose abilify and mestinon even made me worse.
In context ↗ - LDA (low dose abilify) · Much worse
It made me so much worse even at a very low dosage that I was very severe for almost a year
In context ↗ - Lorazepam (Ativan/Tavor) · Helped a lot
It pulled me out of very severe. I can speak again, I can see again, tolerate screens
In context ↗ - Nebivolol · Helped
Nevibolol played a massive role in me regaining my ability to sit, even stand and then walk a few steps again after a year.
In context ↗ - blood thinners · Helped
It made my sleep better, which overall affects my symptoms positively.
In context ↗ - magnesium · Helped
Long term magnesium supplementation helped my twitching (which was at worst really hurtful).
In context ↗ - h1 antagonists · No change
At some point I took h1 antagonists, 7mg melatonin and 1mg lorezepam and it made no difference.
In context ↗ - MCAS meds · No change
I'm also on a ton of MCAS meds just to be save and they do nothing.
In context ↗ - mastcell stabilisation · Helped
I also benefit from mastcell stabilisation but only have gotten better through high dosages of benzos.
In context ↗ - pacing · Not said
I do pace ofc normally but it's just because I feel the payback so easily if I don't.
In context ↗ - hard resting · No change
Hard resting didn't help at all.
In context ↗ - meditation · Worse
I have been open to it, I have tried, but it doesn't give me more than guilt and PEM.
In context ↗ - Vagus nerve stimulation (solar plexus / sole of foot) · Helped
Ich hab das in very severe probiert, dadurch ist mein stress+puls sofort runtergegangen, aber es hat sich weird angefühlt
In context ↗ - sugarfree, glutenfree · Helped
Now that I'm sugarfree, glutenfree, low histamine and on MCAS medicine their way better.
In context ↗ - low glutamate diet · Helped
So yeah I'd say it makes sense but it's no rememdy. It might help things not to get even worse though.
In context ↗ - nap training · Helped
I trained myself pretty well to nap for almost exactly 25-29 mins. It's the best for me.
In context ↗ - Fortimel · Helped
I depended on it for almost a year. Good stuff, made me survive.
In context ↗
Approaches: Anticoagulants · Benzodiazepines · Beta-blockers
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. 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 |
|---|---|---|---|
| onset | ME/CFS began moderate and worsenedpost viral, very stress influenced symptoms. Started moderate, progressively got worse.In context ↗ | Moderate | |
| 2024-01 | progressively worse, described as severe-ishI'm severe-ish and have a lot of support.In context ↗ | Severe | |
| 2024-2025 | low-dose Abilify crash: bedbound, no light, sound or talkingHalf a year, very severe. No lights, no sounds, no talking, bedbound, barely able to move etc.In context ↗ | Very severe | Low-dose Abilify / aripiprazole |
| 2025-04 | high-dose Ativan in hospital under supervisionI was very/extremely severe for almost a year, then I got a really high dose of Ativan under doctor's supervisionIn context ↗ | Near normal | Lorazepam (Ativan) |
| 2025-04 | dose lowered, fell back to very severeThen they lowered the dose and I fell back to very severe within seconds.In context ↗ | Very severe | |
| 2025-05 | stabilised on lower but still high daily AtivanNow they got me on a lower but still high dose daily and I feel good. I'm still sick, but I'm not in the constant fight or flight anymore. I can even walk some steps, can call people, talk, eat.In context ↗ | Severe | Lorazepam (Ativan) |
| 2026-08 | out of very severe, still mostly bedboundI got out of very severe with benzosIn context ↗ | Severe | Lorazepam (Ativan) |
Adverse events
- Low-dose Abilify / aripiprazole“I think LDA messes me up, too. I feel so much worse. Mich easier PEM.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“It made me so much worse even at a very low dosage that I was very severe for almost a year” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“I had really bad night sweats that I didn't have before and it was harder to fall asleep” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“then couldn't sleep for 50 hours and then suddenly couldn't walk anymore and everything got bad” In context ↗ Insomnia from treatment
- Mestinon / pyridostigmine“low dose abilify and mestinon even made me worse” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“It made me stay awake for ober 2 days and totally fucked up my nervous system.” In context ↗ Insomnia from treatment
- Low-dose Abilify / aripiprazole“I already had sleep issues at 0.01mg and have had constant night sweats from then on.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“It made me very/extremely severe, so if I were you, I'd stop.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“I had sleep issues right away and night sweats. But only got worse 1 month later when I couldn't sleep for almost 3 days without any reason.” In context ↗ Insomnia from treatment
- Mestinon / pyridostigmine“Also Mestinon was bad for my screen tolerance.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“It basically set my nervous system to the constant fight or flight mode. It messed up my sleep completely.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“And then I had terrible night sweats, couldn't sleep well and one week I just didn't sleep at all for over 2 days which never happened in my entire life.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“and within a few days I wasn't able to walk anymore, couldn't control my limbs and it went down hill to very/extremely severe pretty fast.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“LDA got me very severe through constant fight or flight arousal.” In context ↗ Made symptoms worse
- Meditation, yoga, breathwork“meditating even only for 10 minutes in a sitting position makes me feel really bad” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
I still have ME and sometimes PEM.
In context ↗ - Sleep problems
Now I just have "normal" insomnia when in PEM
In context ↗ - Light & noise sensitivity
Still sensitive when in a flare but not nearly as bad.
In context ↗ - POTS & dysautonomia
I still have orthostatic intolerance but at least I'm able to be in other positions and it's a bit better.
In context ↗ - Muscle weakness
Now I am neurologically able to walk, but so weak from deconditioning + POTS + still very low energy that I only manage a few steps every other day
In context ↗ - Brain fog
Due to brainfog and lack of practice, my spoken English is usually not that good
In context ↗ - Vision problems
I haven't been able to wear for my glasses for two years and my vision is really bad.
In context ↗ - Temperature regulation
have had constant night sweats from then on
In context ↗
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