Mostly bedbound and housebound with ME/CFS, now somewhat better on low-dose Abilify
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
when i finally got my me/cfs diagnosis
In context ↗ - At worst: Severe
It got me from completely housebound and mostly bedbound to mostly housebound and barely bedbound.
In context ↗ - Now: Somewhat better
It got me from completely housebound and mostly bedbound to mostly housebound and barely bedbound.
In context ↗
Read from 23 of their posts and comments; links to the 17 this page draws on
Summary
They described a long ME/CFS illness with severe crashes, including one around the turn of 2024 after an infection, with flu vaccination and physical exhaustion as possible factors, and another that had lasted over four months by autumn 2024. Low-dose Abilify, started at 0.25 mg in mid-2025 and raised to 1.25 mg, slowly lifted them from completely housebound and mostly bedbound to mostly housebound and barely bedbound. Pregabalin and a progestin for suspected endometriosis were suspected of worsening them.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- benzodiazepine · Not said
i already took benzos before like a few years ago against my pain, which lead to me having to go to the hospital due to a meningitis
In context ↗ - sauna · Helped
before it totally helped my symptoms! i always feel like a newborn baby afterwards
In context ↗ - pregabalin · Not said
i have no prove that it actually caused the crash or if it was the other triggers or a combination, and my doctor adviced me to just keep taking them
In context ↗ - promethazin · Helped
promethazin works for me just fine. started taking it as prn medication, now on a daily basis
In context ↗ - sauerkrautsaft shot · Helped
after passing out the sauerkrautsaft shot always brings me back tho
In context ↗ - alcohol free beer · Not said
i m literally drinking alcohol free beer rn!
In context ↗ - cold shower · Not said
they re exhausting, but not as exhausting as the agony of hot flushes and sleepless nights
In context ↗ - desloratadin · Helped
when i use them my symptoms do get better immediately
In context ↗ - allergy nose spray · Helped
allergy nose spray from my gp and when i use them my symptoms do get better immediately
In context ↗ - uti vaccine · No change
i postponed it for a few weeks when i felt slightly more stable and i could gladly handle it quite well
In context ↗ - Low Dose Abilify · Helped a lot
It got me from completely housebound and mostly bedbound to mostly housebound and barely bedbound.
In context ↗ - Dienogest/ Zafrilla · Worse
I’ve been taking it for a month now and just linked my recent excessive tiredness and fatigue with the onset of this new medication
In context ↗ - pacing · Not said
Now I only have to pay attention to not let my pacing slack off, I tend to get carried away with euphoria at the first sight of success.
In context ↗ - tianeptin · Not said
my cocktail contains: tianeptin, lamotrigin, quiviviq, pregabalin, panthoprazol, desloretadin
In context ↗
Approaches: Other drugs and medicines
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | ME/CFS onset; trigger not describedi developed allergy symptoms 2 years ago after getting me/cfsIn context ↗ | Not stated | |
| 2024-01-10 | severe crash after an infection/cold, flu vaccination and physical exhaustionshortly afterwards i had a severe crash caused by an infection/ coldIn context ↗ | Severe | |
| 2024-02-22 | went to sauna after an episode and got sick againi went to the sauna 2 days ago and now i’m sick againIn context ↗ | Moderate | |
| 2024-10-21 | crash within a crash lasting over four months, baseline droppedmy current one lasts for already 4+ months too and it deffo feels so different like my baseline dropped significantlyIn context ↗ | Severe | |
| 2026-02-25 | gradual baseline rise after six months of low-dose AbilifyIt got me from completely housebound and mostly bedbound to mostly housebound and barely bedbound.In context ↗ | Moderate | Low-dose Abilify / aripiprazole |
| 2026-10-06 | excessive tiredness after starting Zafrilla/dienogest for suspected endometriosisit now got to an extent where I want to sleep constantly and in every waking moment I’m so terribly tiredIn context ↗ | Severe |
Adverse events
- Pregabalin (Lyrica)“these symptoms are high immune deficiency and several gastrointestinal complaints (which i had too)” In context ↗ Side effects
- Hyperthermia and sauna“so i went to the sauna 2 days ago and now i’m sick again and probably about to enter another episode” In context ↗ Made symptoms worse
- Vaccines used as treatment (BCG, staph toxoid, JE)“the only noticeable side effect for me was also a sore arm that weirdly lasted for over a week” In context ↗ Side effects
- Dienogest (Visanne)“I’ve been taking it for a month now and just linked my recent excessive tiredness and fatigue with the onset of this new medication” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
It doesn’t take away the PEM, but it got much less worse.
In context ↗ - Sleep problems
i just got it prescribed against my severe insomnia
In context ↗ - Neuropathy & tingling
recently got prescribed pregabalin against my neuropathic pain
In context ↗ - Gut problems
several gastrointestinal complaints (which i had too)
In context ↗ - Mast cell (MCAS) & allergies
i developed allergy symptoms 2 years ago after getting me/cfs
In context ↗ - Temperature regulation
i also have severe hot flushes on a daily
In context ↗
Ask Miruvor AI
Similar stories
-
Almost bedridden with ME/CFS, now much better after a specialist regimen and pacing
A California woman infected with COVID in March 2020 was sick six months, partly recovered, then relapsed and was almost bedridden by early 2023, unable to drive and sensitive to light and noise. An out-of-pocket ME/CFS specialist regimen of LDN, Abilify,…
-
Bedbound for months with ME/CFS, now much better after vein surgeries and physical therapy
A 29-year-old man's long COVID began in mid-2021 after his second Pfizer dose and worsened for three years; an early-2024 presumed reinfection left him 95% bedbound for months, and he has been unable to work for over three years. Vein surgeries, compression…
-
Bedbound for months with ME/CFS, now somewhat better; MCAS treatment eased some
Canyon 21661 fell ill after a viral infection in January 2013 and worked full time for nine years while declining, then became bedbound for months in 2020 and over six months in 2023, ending their career. They recovered to a mostly housebound moderate…
-
Long COVID fatigue and tachycardia; kambo and ivermectin helped early, then relapse
Birch 29532 caught COVID in early 2021 and developed long COVID with tachycardia; after a third infection during pregnancy she became debilitated by fatigue four months after her baby was born in January 2025. Mould avoidance and low-dose naltrexone didn't…