ME/CFS
Severe → relapsed
Severe ME/CFS, improved with rest and low-dose Abilify then relapsed
- 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
i have had CFS symptoms for a good chunk of my life
In context ↗ - At worst: Severe
then i dropped to a steady severe
In context ↗ - Now: Relapsed
the gains i got originally have faded and i have days where i dont leave bed much again
In context ↗ - Began after: nothing they could name
it kind of just felt as if it progressed over time?
Read from 55 of their posts and comments; links to the 26 this page draws on
Summary
Petrel 94601, a woman in Germany, has had ME/CFS symptoms since her early teens, about 20 years, with three remissions. Stimulants in 2023 left her severe; a year of rest brought her back to moderate. Low-dose Abilify from July 2026 gave a big early boost, including a five-hour IKEA trip, but the gains faded and side effects made her consider stopping.
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What they tried
What they credit
Also tried
progesterone-only pill (Slynd/Slinda)· Helpedcompression wear· Helpedvery consistent cardio· Helpedresistance band and body-weight workouts· Helpedibuprofen· HelpedTENS machine· No changeself-guided elimination diets· No changeiron pills· Worsemethylphenidate / ADHD stimulants· Worseinpatient group therapy· Worsebreathwork / meditation· Worsealcohol (wine)· Not saidvitamins and supplements· Not saidcutting out alcohol, meat and junk food· Not saidHormonal birth control (unspecified)· Not said
Their words about each treatment
- iron pills · Worse
my stomach wouldn't tolerate the pills
In context ↗ - methylphenidate / ADHD stimulants · Worse
the meds didn’t help my fatigue no matter the dose and i didn’t like the “wired but tired” feeling
In context ↗ - wellbutrin (bupropion) · Helped
the first time was when i was 17, i was prescribed wellbutrin
In context ↗ - sertraline · Helped
the second time i was on sertraline after a stint in the inpatient ward. i did very well for a couple weeks
In context ↗ - progesterone-only pill (Slynd/Slinda) · Helped
i skip the sugar pills and have no endo symptoms anymore
In context ↗ - compression wear · Helped
it was sensory hell but it was a non negotiable for pain management
In context ↗ - inpatient group therapy · Worse
it did me no good and only tired me out
In context ↗ - breathwork / meditation · Worse
using all my energy to focus on breathing makes me notice how i can’t draw a full breath ... i feel suffocated and panicky
In context ↗ - TENS machine · No change
i tried it on my shoulder and knee ... it helped none of those things.
In context ↗ - self-guided elimination diets · No change
ive done tons of elimination diets and nothing changes
In context ↗ - very consistent cardio · Helped
the only thing ive ever noticed helping was very consistent cardio, but i cant do that now
In context ↗ - LDA (abilify/aripiprazole) · Helped a lot
i started at .25mg in early july and by early august i was at .5mg and felt a huge boost
In context ↗ - constant rest and isolation · Helped
it took me maybe a year of constant rest and isolation to climb back to moderate
In context ↗ - resistance band and body-weight workouts · Helped
now i do resistance band workouts at home 4x per week, my back is soooo much happier
In context ↗ - alcohol (wine) · Not said
i use alcohol pretty heavily to get myself to forget about the pain and problems and try and properly relax for once and also get some sleep
In context ↗ - ibuprofen · Helped
i usually take ibuprofen about 4 hours after and it helps the body aches a lot
In context ↗ - vitamins and supplements · Not said
take all my vitamins and supplements
In context ↗ - cutting out alcohol, meat and junk food · Not said
i cut out alcohol, meat, and junk food
In context ↗ - Hormonal birth control (unspecified) · Not said
when i started my HBC three months ago my hands and feet were swollen, hot and stinging but then sweating profusely and freezing cold. for the first entire month
In context ↗
Approaches: SSRIs · Other antidepressants · Other drugs and medicines · Radical rest
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 |
|---|---|---|---|
| ~2005 | symptoms began in high school, missing much schoolsuddenly in high school i was a tired broken shell of a personIn context ↗ | Moderate | |
| 2014 | spontaneous remission, moved to Germanyin 2014 i was in remission and making big things happen, and moved to germany with 2 gigantic suitcasesIn context ↗ | Near normal | |
| 2015-2017 | energy levels got worse after moving countriesi then moved countries entirely half a year later and i’ve gotten worse sinceIn context ↗ | Moderate | |
| 2020-2021 | remission lasting a year to a year and a half, running 5k almost dailyone of them lasted a good year to a year and a half, into the pandemic! i was running 5k almost dailyIn context ↗ | Near normal | |
| late 2021 | slowly deteriorated again, possibly from covid stressaround late 2021 i slowly just started to deteriorate again. it might have been the stress of covidIn context ↗ | Moderate | |
| 2023-2024 | stimulant trials caused rolling PEM and a drop to steady severei stopped the meds and then had rolling PEM for a while and then i dropped to a steady severeIn context ↗ | Severe | Methylphenidate (Ritalin, Concerta) |
| ~2025 | climbed back to moderate after a year of constant restit took me maybe a year of constant rest and isolation to climb back to moderateIn context ↗ | Moderate | Radical rest |
| Aug 2026 | five-hour IKEA trip and 6.7 km walked on low-dose Abilifyi survived an IKEA trip, with over an hour total of public transit, and was out for FIVE entire hours!!! according to my apple watch i walked *6.7KM*In context ↗ | Mild | Low-dose Abilify / aripiprazole |
| 2026-09-07 | Abilify gains faded and she is back in bed more daysthe gains i got originally have faded and i have days where i dont leave bed much againIn context ↗ | Moderate |
Adverse events
- Methylphenidate (Ritalin, Concerta)“i didn’t like the “wired but tired” feeling they gave me and the early evening crashes” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“i stopped the meds and then had rolling PEM for a while and then i dropped to a steady severe” In context ↗ Made symptoms worse
- Iron infusion / ferritin repletion“then my stomach wouldn’t tolerate the pills” In context ↗ Gut side effects
- Bupropion (Wellbutrin)“this time around it made me so dizzy i couldnt walk!! after two miserable weeks of being in bed with the spins 24/7 i had to quit” In context ↗ Side effects
- Sertraline (Zoloft)“stop my medication immediately because my platelet count was like 80something” In context ↗ Blood count problems
- Hormonal birth control (unspecified)“when i started my HBC three months ago my hands and feet were swollen, hot and stinging but then sweating profusely and freezing cold. for the first entire month” In context ↗ Side effects
- Meditation, yoga, breathwork“using all my energy to focus on breathing makes me notice how i can’t draw a full breath (i have asthma and EDS i am Not Good At Manual Breathing) and i feel suffocated and panicky” In context ↗ Side effects
- CBT and psychotherapy“it did me no good and only tired me out” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“now that i am on abilify my heat intolerance has gotten 10x worse” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“the abilify makes me ferociously hungry” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“lastly i am much more clumsy lately. i trip over my own feet, nearly fall over while just standing still, and i have been dropping things constantly” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“i dont feel its helped my brain fog (perhaps made it worse, actually...)” In context ↗ Made symptoms worse
- Compression garments“i bought some drug store ones recently and they were so uncomfortable i only had them on for about 10 minutes” In context ↗ Side effects
- “canNOT handle the pain of the insoles” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
i stopped the meds and then had rolling PEM for a while
In context ↗ - Brain fog
as usual the brain fog is brain fogging
In context ↗ - POTS & dysautonomia
i can go from 70BPM lying down to 120+ upon standing
In context ↗ - Gut problems
now i have diarrhoea most days
In context ↗ - Pain & fibromyalgia
i cannot stand for even short periods without intense back pain
In context ↗ - Headaches & migraine
i am so exhausted on top of the usual fatigue and have been getting daily headaches
In context ↗ - Temperature regulation
i have never been able to regulate my temperature and ive always been sensitive to heat
In context ↗ - Heart symptoms & palpitations
i made some toast and my heart was pounding. i took my pulse and it was 145
In context ↗ - Anxiety & low mood
i was in such a major depression and shutdown i literally didn’t speak a word for an entire week
In context ↗ - Light & noise sensitivity
it’s constant banging and whirring coming down the wall right behind my bed
In context ↗ - Muscle weakness
probably from being in bed so much that my muscles are atrophied to hell
In context ↗ - Flu-like symptoms
i always know when i wake up and my throat hurts that i f'd up
In context ↗
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