Bedbound with very severe ME/CFS, now much better on low-dose Abilify
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 2 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I do have an actual diagnosis for MECFS and POTS
In context ↗ - At worst: Very severe
Went from very severe (bedbound, near non-communicative) to being able to go outside once, sometimes twice a day on an electric bike
In context ↗ - Now: Much better
I'm somehow back to the lower end of mild after 2 years of getting wrecked
In context ↗
Read from 41 of their posts and comments; links to the 18 this page draws on
Summary
Was mild and kept exercising intensely until a final crash left them very severe, bedbound and near non-communicative. Low-dose Abilify, started around October 2025, brought them from very severe to moderate within three months and to the lower end of mild by September 2026, after about two years of being wrecked. PEM, tinnitus, visual snow and muscle twitching remain. A low-histamine diet and H1/H2 antihistamines resolved their MCAS vomiting.
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What they tried
What they credit
Also tried
Their words about each treatment
- HIIT, crossfit, running, cycling, kitesurfing, surfing · Much worse
started with 3x a week, went fine for a year, but enjoyed it so much I went to 6x a week: major crash
In context ↗ - Therapy · Helped a lot
Therapy helped for me (that was 4 years ago). I nearly never have them anymore.
In context ↗ - Pacing / PEM avoidance · Helped
Pem avoidance becomes really important. For me pem feeded mcas more than mcas feeded pem.
In context ↗ - Heart rate monitor (Polar watch and H10 chest strap) · Helped
This really helped me get a grip to when I'm doing too much
In context ↗ - anti vomiting meds · Helped
I have tried different positions, different food schedule, increasing head of bed, anti vomiting meds, ginger tea. ... They help but maybe I am missing something
In context ↗ - ginger tea · Helped
anti vomiting meds, ginger tea. ... They help but maybe I am missing something
In context ↗ - low histamine diet · Helped a lot
I tried the low histamine diet which made a world of a difference
In context ↗ - H1 blocker (Allegra / fexofenadine) · Helped a lot
asked my GP for the histamine blocker which did wonders again
In context ↗ - H2 blocker (Pepcid / famotidine) · Helped a lot
H2 improved it even more
In context ↗ - quercetin · Helped
Things that helped me was low histamine diet, H1+H2 blockers and quercetin.
In context ↗ - Low-dose Abilify (aripiprazole) · Helped a lot
It brought me from very severe to moderate/mild, it doesn't work for everyone but it certainly did help me
In context ↗ - lorazepam · Not said
My neurologist prescribed me LDA and lorazepam to be taken together. I didn't have any problems.
In context ↗
Approaches: H1 antihistamines · H2 blockers · Diet · Other drugs and medicines · Pacing · Supplements
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. 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 | After |
|---|---|---|---|
| — | mild ME, exercising heavilyWhen I was mild I did many workouts too, and could handle much load pretty well.In context ↗ | Mild | |
| — | major crash after HIIT 6x a weekwent to 6x a week: major crashIn context ↗ | Not stated | |
| — | crashed after cycling 180km a day and hikingstarted cycling back when it was 38+ degrees, and crashed completely into oblivionIn context ↗ | Not stated | |
| — | crashed into severe after months of kitesurfing, surfing and runningpushed through my fatigue, managed to do this for ~5months, but crashed SOOOOOO hard, that unfortunately I no longer recover and remain severeIn context ↗ | Severe | |
| 2025 | bedbound, near non-communicativeWent from very severe (bedbound, near non-communicative)In context ↗ | Very severe | |
| 2026-01 | improved from very severe to moderateI went from very severe to moderate in 3 months, so it certainly worked for me.In context ↗ | Moderate | Low-dose Abilify / aripiprazole |
| 2026-07 | down to mild, out on an electric bikeNow at mild the limitations are mostly gone, but the tinnitus/buzzing, visual snow, muscle fasciculations are still here.In context ↗ | Mild | Low-dose Abilify / aripiprazole |
| 2026-09-24 | lower end of mildI'm somehow back to the lower end of mild after 2 years of getting wreckedIn context ↗ | Mild |
Adverse events
- Low-dose Abilify / aripiprazole“the first few days I became really sleepy, sometimes sleepy enough that I took a nap” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“The side effects were quite intense at first, also pem felt different and weird” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Do I still have pem, yes.
In context ↗ - Brain fog
Also cognitively I can talk for about 1 to 2 hours a day.
In context ↗ - POTS & dysautonomia
I do have an actual diagnosis for MECFS and POTS
In context ↗ - Mast cell (MCAS) & allergies
it seems the cause of my nausea and vomiting was MCAS
In context ↗ - Gut problems
I get so obliterated by it at night
In context ↗ - Light & noise sensitivity
Had similar cognitive symptoms and limitations.
In context ↗ - Breathlessness
combined with severe chest pain and slight trouble breathing
In context ↗ - Heart symptoms & palpitations
My heartrate would no longer go crazy
In context ↗ - Neuropathy & tingling
muscle fasciculations are still here
In context ↗ - Anxiety & low mood
my mental health became soo much better after I finally knew what my body needed
In context ↗ - Tinnitus
the tinnitus/buzzing, visual snow
In context ↗ - Temperature regulation
Yes, I had this too and it was awful. In my case it was MCAS
In context ↗ - Vision problems
visual snow, muscle fasciculations are still here
In context ↗
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