Bedbound with severe ME/CFS, Abilify helped for years then relapsed

Condition: ME/CFS
At worst: Severe (mostly bedbound)
Ill before improving or writing: Not stated
Last post: Apr 2026

In their words

At worst: SevereFor me before abilify I was mostly bedbound, fatigued with speech, and too sound sensitive to spend much time out of my room. In context ↗
Now: RelapsedIt worked for 4 years for me, then I went back to house I was beforehand. I have been in a wheelchair 99% of the time for a year now In context ↗

Read from 147 of their posts and comments; links to the 59 this page draws on

Summary

They had severe ME/CFS, mostly bedbound and unable to walk, with POTS, MCAS and sound sensitivity. Low-dose Abilify, started around late 2020, produced a dramatic improvement within days; they rose from severe to moderate and could leave the house and socialise. After about four years the benefit faded and they returned to their previous severity, using a wheelchair 99% of the time by November 2025. They developed tardive dyskinesia.

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What they tried

What they credit

Abilify (aripiprazole)· Helped a lot · main · wore off midodrine· Helped propranolol· Helped pacing with a heart rate monitor· Helped radical rest / aggressive rest· Helped venlafaxine (SNRI)· Helped

Also tried

licorice root· Helped tube feeding· Helped iron supplementation· Helped caffeine· Helped intermittent fasting· Helpeda Parkinson med· Helpedwhole protein-rich food, 6 small meals a day· Helpedcelebrex· No change thiamine (allithiamine)· No change valtrex· No change creatine· No change mestinon· Worse LDN· Worse D-ribose· Worse glutathione sachets· Worse methylfolate· Worse vitamin D· Worse whey protein· Worse monolaurin· Worse red light therapy (full body panel and red light cap)· Worse keto diet· Worseprotein powders and formula foods· Worsepramiprexole· Much worseivabradine· Not saidB vitamins and magnesium· Not saidturmeric· Not saidmelatonin and doxylamine succinate· Not saidNAD+ nose spray· Not said B12· Not said Cannabis (THC, marijuana)· Not said

Their words about each treatment

Abilify (aripiprazole) · Helped a lotIt's the closest thing to a miracle drug I've ever taken. In context ↗
mestinon · Worsenormal dose made me feel like I was dying In context ↗
midodrine · HelpedThings that have helped me the most are abdominal compression, electrolyte/salt intake, saline infusions, midodrine and propranolol. In context ↗
propranolol · HelpedYay, improves POTS, prevents adrenaline surges and helps anxiety. Definitely makes a significant difference. I take 10mg 2x a day. In context ↗
licorice root · Helpedit helps retain fluid and is like a gentler herbal version of fludrocortisone In context ↗
ivabradine · Not saidI have tried ivabradine, i've tried everything except IVIG In context ↗
B vitamins and magnesium · Not saidI supplement B vitamins, magnesium and other electrolytes so I don't think it's a deficiency. In context ↗
celebrex · No changeEventually stopped bc didn't notice much difference. In context ↗
turmeric · Not saidI also have turmeric every day. In context ↗
pacing with a heart rate monitor · HelpedI use pacing with a HRM and paid support carers to help prevent PEM. In context ↗
LDN · WorseUnfortunately it made my chronic pain worse. In context ↗
thiamine (allithiamine) · No changeI didn't notice any effect either. I'm just going to keep taking it until I run out. In context ↗
D-ribose · WorseI often got hypoglycaemic from taking it. In context ↗
tube feeding · HelpedYes i have a tube for quality of life In context ↗
radical rest / aggressive rest · HelpedI improved dramatically albeit slowly by resting more then needed In context ↗
pramiprexole · Much worseI had bad side effects from pramiprexole, ended up in hospital. It did give me an amazing energy increase tho, but to the point of akathisia. In context ↗
valtrex · No changeI've been on 500mg a day for a month or so, I haven't noticed an effect on the mecfs. In context ↗
melatonin and doxylamine succinate · Not saidAnything that's worked well beyond melatonin and doxylamine succinate? In context ↗
NAD+ nose spray · Not saidDoes it sting a lot? I did when I tried it In context ↗
creatine · No changeI've been trying it recently but it made me so gassy! Haven't noticed a difference from it myself. In context ↗
iron supplementation · HelpedI think my shortness of breath has reduced, I also have more colour in my lips/face after supplementing. In context ↗
glutathione sachets · WorseI'm flared up with swollen glands and just extra fatigued despite being extra restful lately. In context ↗
B12 · Not saidI've been having plenty of B12 during this. In context ↗
methylfolate · WorseI found I become agitated from methylfolate, like really agitated. In context ↗
vitamin D · Worseit's one of the only supplements I'm apprehensive to take bc I swear I always flare up afterwards. In context ↗
caffeine · HelpedI physically feel better on caffeine with less muscle heaviness. In context ↗
venlafaxine (SNRI) · HelpedI slowly tapered off and my function slowly tanked to a severe state. In context ↗
intermittent fasting · HelpedI fall into IF just because it does help me POTS wise. In context ↗
whey protein · WorseI sometimes have periods where I can't tolerate whey because it's too inflammatory. In context ↗
a Parkinson med · HelpedIve switched to a Parkinson med for ME and it's helping In context ↗
monolaurin · WorseI've found it aggravates my immune system and causes my glands to swell. In context ↗
red light therapy (full body panel and red light cap) · WorseI do more than 10 minutes or so I will get PEM. In context ↗
keto diet · WorseKeto diet tanks my blood pressure too severely. In context ↗
protein powders and formula foods · WorseProtein powders and formula foods make me feel immediately bad - a racing heart, muscle pain and headache. In context ↗
whole protein-rich food, 6 small meals a day · HelpedI do better with 6 small similarly sized meals a day In context ↗
Cannabis (THC, marijuana) · Not saidOne drawback and worry for me is that it always gives me a racing heart rate and light-headedness. In context ↗

Approaches: POTS medication · SNRIs · Beta-blockers · Other drugs and medicines · Pacing · Radical rest

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
onset	Early illness with pain, later sedation/fatigueFor the first few years, now it's switched more to sedation/fatigue. In context ↗	Not stated
before Abilify	Mostly bedbound, unable to walk, limited speech and sound sensitivebefore abilify I was mostly bedbound, fatigued with speech, and too sound sensitive to spend much time out of my room. In context ↗	Severe
2021-04-03	After five months on Abilify, walked on the beach and took a 3-hour drive without PEMA couple days ago I walked the most I have in 2 years (on the beach!) and no crash! In context ↗	Severe	Low-dose Abilify / aripiprazole
2022-07-16	Improved to moderate; out several times a week in a wheelchair, could socialise and talk for hoursIt was severe (limited talking, housebound, needing earplugs most of the time) and now I'm more toward moderate In context ↗	Moderate	Low-dose Abilify / aripiprazole
2022-11-05	Relapse after activity binge and exercise; in bed 23 hours a dayI ended up going on an activity binge and relapsing. In context ↗	Severe
2023-05-09	Could leave the house most days, talk freely and exercise a little without PEMNow I can leave the house most days, can talk as much as I want and can even exercise (to an extent) without PEM. In context ↗	Mild	Low-dose Abilify / aripiprazole
2023-05-14	Stopped using wheelchair at home; walking caused PEM, all day in bed and carer washed faceNow just walking around the house is causing PEM. In context ↗	Severe
2023-11-08	Able to walk 100 m, take weekend trips, socialise and shower dailyFrom 23hrs a day in bed and fatigued to talk, to able to walk a 100m, go on weekend trips, socialise, shower daily. In context ↗	Mild	Low-dose Abilify / aripiprazole
2024-02-01	Moderate after two years severe; quality of life much betterI've become moderate after 2 years severe. In context ↗	Moderate	Low-dose Abilify / aripiprazole
2024-05-15	Prolonged crash, longest recovery yet, while on a lower Abilify doseI'm 2 weeks deep and this is the longest I've taken to recover. In context ↗	Not stated
2025-05-12	90% bedboundI'm 90% bedbound ATM In context ↗	Severe
2025-08-24	Function declined to severe during slow SNRI taperI slowly tapered off and my function slowly tanked to a severe state. In context ↗	Severe
2025-09-15	Switched to a Parkinson's medication for ME, reported helpingIve switched to a Parkinson med for ME and it's helping In context ↗	Severe
2025-11-08	Returned to pre-Abilify severity; wheelchair 99% of the time for a yearIt worked for 4 years for me, then I went back to house I was beforehand. I have been in a wheelchair 99% of the time for a year now In context ↗	Severe

Adverse events

Mestinon / pyridostigmine“Going to try microdose mestinon next, normal dose made me feel like I was dying.” In context ↗ Made symptoms worse
Low-dose naltrexone“I gave it two solid goes. If it doesn't work out, it doesn't take long to be out of your system. Unfortunately it made my chronic pain worse.” In context ↗ Made symptoms worse
Cannabis (THC, marijuana)“One drawback and worry for me is that it always gives me a racing heart rate and light-headedness.” In context ↗ Heart rhythm problems
D-ribose“I often got hypoglycaemic from taking it.” In context ↗ Other
Tube feeding (NG, NJ, PEG, TPN)“I had pain and issues at a size 12.” In context ↗ Side effects
Licorice and glycyrrhizin“I over did it one time and just got a headache from the fluid retention.” In context ↗ Side effects
Low-dose Abilify / aripiprazole“I developed tardive dyskinesia” In context ↗ Side effects
“I had bad side effects from pramiprexole, ended up in hospital.” In context ↗ ER visit
“It did give me an amazing energy increase tho, but to the point of akathisia.” In context ↗ Side effects
Venlafaxine (Effexor)“I do believe it lowers my sex drive and makes it take longer to orgasm.” In context ↗ Side effects
Low-dose Abilify / aripiprazole“No but I did experience it when my LDA dose was too high.” In context ↗ Side effects
Low-dose Abilify / aripiprazole“I'm on 0.1mg now. I became hyper sensitive to it 😭.” In context ↗ Side effects
Low-dose Abilify / aripiprazole“I'm getting insomnia with anything over 0.3mg.” In context ↗ Insomnia from treatment
NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“Does it sting a lot? I did when I tried it” In context ↗ Side effects
Creatine“I've been trying it recently but it made me so gassy!” In context ↗ Gut side effects
Caffeine and coffee“Unfortunately this has been the cause of my PEM episodes the last few months bc it's SO HARD to keep paced when you suddenly feel wired energy and a drive to DO, DO, DO.” In context ↗ Made symptoms worse
Glutathione“I'm flared up with swollen glands and just extra fatigued despite being extra restful lately. I tried halfing the dose after a day off and I've flared up again.” In context ↗ Autoimmune or inflammatory flare
Methylfolate (L-methylfolate, 5-MTHF)“I found I become agitated from methylfolate, like really agitated.” In context ↗ Mood or psychiatric effects
Vitamin D and sun exposure“I swear I always flare up afterwards. ... It feels like it activates my immune system e.g. swollen glands and worsens my ME.” In context ↗ Autoimmune or inflammatory flare
Low-dose Abilify / aripiprazole“LDA unfortunately made me even more compulsively sexual.” In context ↗ Side effects
Whey protein“I sometimes have periods where I can't tolerate whey because it's too inflammatory.” In context ↗ Autoimmune or inflammatory flare
Monolaurin (Lauricidin)“I've found it aggravates my immune system and causes my glands to swell.” In context ↗ Autoimmune or inflammatory flare
Red and near-infrared light therapy“I can also attest it's not a scam and certainly does something because I do more than 10 minutes or so I will get PEM. ... I also managed to get PEM from using just a red light cap designed for hair loss.” In context ↗ Made symptoms worse
“Protein powders and formula foods make me feel immediately bad - a racing heart, muscle pain and headache.” In context ↗ Made symptoms worse
“I do best with ones designed for diabetes (nutren) but they still inflame me and set off dumping syndrome too much” In context ↗ Gut side effects
Keto and low-carb diets“Keto diet tanks my blood pressure too severely.” In context ↗ Low blood pressure or fainting
Venlafaxine (Effexor)“It was about 3 months later when the protracted withdrawal hit, was very agitated and not myself, I had to go back on it.” In context ↗ Withdrawal problems

Symptoms mentioned

Anxiety & low mood Brain fog Breathlessness Flu-like symptoms Gut problems Headaches & migraine Heart symptoms & palpitations Light & noise sensitivity Mast cell (MCAS) & allergies Muscle weakness POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems

Their words about their symptoms

Post-exertional malaisethis has been the cause of my PEM episodes the last few months In context ↗
Brain fogmy cognition and energy is improved In context ↗
POTS & dysautonomiaI have treatment resistant POTS. In context ↗
Mast cell (MCAS) & allergiesThroat tightness from MCAS, which flares with PEM. In context ↗
Sleep problemsI'm getting insomnia with anything over 0.3mg. In context ↗
Pain & fibromyalgiaUnfortunately it made my chronic pain worse. In context ↗
Headaches & migraineI also have regular and severe headaches. In context ↗
Gut problemsmost foods make me feel really sick in a crash In context ↗
Light & noise sensitivitytoo sound sensitive to spend much time out of my room. In context ↗
BreathlessnessI think my shortness of breath has reduced In context ↗
Heart symptoms & palpitationsthe heart palpitations worry me sometimes. In context ↗
Muscle weaknessI physically feel better on caffeine with less muscle heaviness. In context ↗
Anxiety & low moodReally struggling with sleep anxiety. In context ↗
Flu-like symptomsflared up with swollen glands and just extra fatigued In context ↗

Bedbound with severe ME/CFS, Abilify helped for years then relapsed

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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