ME/CFS
Severe → much betterIll 6.5 years before improving or writingNeeds ongoing treatment
Mostly bedbound for years with ME/CFS, now much better after Abilify and propranolol
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6.5 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I got sick with ME/CFS in June of 2020 after a post op infection for my gender affirming double masectomy.
In context ↗ - At worst: Severe
was mostly bedbound aside from using the toilet, could not do hygiene, and had no hobbies
In context ↗ - Now: Much better
I've partially recovered due to controlling my pots, ADHD, and starting abilify. I still get PEM, I still get crashes, I just went from moderate/severe to mild.
In context ↗ - Began after: a bacterial or tick-borne infection
I got sick with ME/CFS in June of 2020 after a post op infection for my gender affirming double masectomy.
In context ↗
Read from 99 of their posts and comments; links to the 33 this page draws on
Summary
They fell ill in June 2020 after a post-operative infection and spent years mostly bedbound, leaving the house once every couple months. Starting high-dose Abilify for psychosis in 2025, then raising propranolol for POTS and adding buspirone and clonidine, took them from moderate/severe to mild; they held that for about a year before worsening to moderate/severe with rolling PEM after getting a puppy, then returning to mild. They still get PEM and crashes, have about 50% of their old capacity, cannot work and use a walker.
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What they tried
What they credit
Also tried
pregabalin (lyrica)· Helped a lotcannabis (1:1 sativa gummy)· Helpedmeditation· Helpedclonidine (clonodine)· Helpedvilazodone· HelpedDBT (radical acceptance)· Helpedtapping (EFT)· Helpedmeloxicam· Helpedhydroxychloroquine· Helpedrollator· Helpedantidepressants (about 8 tried)· No changetwo other antipsychotics· No changephysical therapy (land, for EDS)· WorseMonster energy drink· Not saidNuvaRing· Not saidiron· Not saidVitassium (salt supplement)· Not saidmetformin· Not saidomeprazole· Not said
Their words about each treatment
- pacing · Helped
Pacing, treating my pots with propranolol, and ADHD/PTSD meds (non stimulant, clonodine).
In context ↗ - physical therapy (land, for EDS) · Worse
I did not gain any muscle with regular lt and experienced severe PEM.
In context ↗ - cannabis (1:1 sativa gummy) · Helped
Weed gives me energy and makes crashes easier too.
In context ↗ - Monster energy drink · Not said
I drink an energy drink. Usually monster.
In context ↗ - meditation · Helped
I meditate, idk if that's what you're looking for. I put on a podcast on the background and then I meditate for a while and it usually helps me sleep
In context ↗ - propranolol · Helped a lot
I haven't noticed anything negative, I feel better when I take them but I also have POTS
In context ↗ - Abilify (aripiprazole) · Helped a lot
I started abilify, buspar, and propranolol (for pots) and improved from moderate/severe to mild.
In context ↗ - clonidine (clonodine) · Helped
Clonodine helps with executive dysfunction and brain fog and nightmares which makes sleep better.
In context ↗ - buspirone (buspar) · Helped
Buspirone helped with OCD spirals that kept constantly causing PEM and also helps with exercise tolerance for some reason.
In context ↗ - antidepressants (about 8 tried) · No change
Antidepressants never worked for me and I tried like 8.
In context ↗ - vilazodone · Helped
The test indicated vilazodone would be a good option and it's been amazing. ... it had no impact on my severity but substantially helped my depression
In context ↗ - two other antipsychotics · No change
I started it purely out of desperation after trying two other antipsychotics that didn't work.
In context ↗ - pregabalin (lyrica) · Helped a lot
Pregabalin withdrawal is awful and it has made me gain A LOT of weight. However, it works incredibly well and I can't function without it bc I'm in so much pain
In context ↗ - DBT (radical acceptance) · Helped
I've found the DBT skill radical acceptance very helpful
In context ↗ - tapping (EFT) · Helped
Tapping is working so well for me though
In context ↗ - NuvaRing · Not said
I use the nuva ring. I switched to it about five years ago from continuous pills.
In context ↗ - pool PT · Helped
What helped me was pool pt.
In context ↗ - radical rest · Helped
Radical rest definitely helped as well
In context ↗ - meloxicam · Helped
Without any one of those my hua is down to about 3 hours.
In context ↗ - hydroxychloroquine · Helped
hydroxychloroquine for inflammation found on blood tests
In context ↗ - metoprolol · Helped
I'm on metoprolol now and it works great.
In context ↗ - iron · Not said
I take Iron, Vitassium (salt supplement), Meloxicam
In context ↗ - metformin · Not said
Metformin (for HS, I'm thankfully not also diabetic)
In context ↗ - omeprazole · Not said
Vilazodone, Omeprazole, and Ariproprozal (abilify)
In context ↗ - rollator · Helped
I use a rollator and it's a life saver.
In context ↗
Approaches: Beta-blockers · Other drugs and medicines · Pacing · Physiotherapy and rehab · 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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| June 2020 | ME/CFS began after a post-op infection following gender-affirming surgeryI got sick with ME/CFS in June of 2020 after a post op infection for my gender affirming double masectomy.In context ↗ | Mild | |
| — | got a puppy; rolling PEM worsened them from mild/mod to mod/severeI made the mistake of getting a puppy and it made me get rolling PEM until I was mod/severe (I had been mild/mod).In context ↗ | Moderate | |
| early 2025 | mostly bedbound with almost constant PEM before medicationBefore meds I was reaching a point where I was legitimately considering buying a bed pan so I wouldn't have to get up bc I was in almost constant PEM.In context ↗ | Severe | |
| May 2025 | Abilify for psychosis; ME improved to mild-moderateIt's only been two months but I would now classify myself as mild-moderate instead of moderate-severe.In context ↗ | Moderate | Low-dose Abilify / aripiprazole |
| July 2025 | increased propranolol for POTS alongside Abilify; reached mildI started/increased ability while also increasing propranolol for my POTS. Between the two of them it took me to mild.In context ↗ | Mild | |
| 2026-10-28 | stable at mild, still crashes, cannot workI've partially recovered due to controlling my pots, ADHD, and starting abilify. I still get PEM, I still get crashes, I just went from moderate/severe to mild.In context ↗ | Mild |
Adverse events
- “My surgery in 2020 did make it noticably worse though” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“That's my only side effect, it hasn't changed my general PEM threshold.” In context ↗ Side effects
- Physical therapy / physiotherapy“I did not gain any muscle with regular lt and experienced severe PEM.” In context ↗ Made symptoms worse
- Pregabalin (Lyrica)“Pregabalin withdrawal is awful and it has made me gain A LOT of weight.” In context ↗ Withdrawal problems
- Pregabalin (Lyrica)“Pregabalin withdrawal is awful and it has made me gain A LOT of weight.” In context ↗ Side effects
- Propranolol (Inderal)“I actually stopped propranolol because with the clonodine it was gradually lowering my blood pressure into danger territory.” In context ↗ Low blood pressure or fainting
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I still get PEM if I do too much.
In context ↗ - Brain fog
my brain fog is so much better
In context ↗ - POTS & dysautonomia
I have POTS too
In context ↗ - Sleep problems
At my worst I needed 18 hours in a 24 hour period to avoid PEM.
In context ↗ - Pain & fibromyalgia
I use it for pain 2-3x per week.
In context ↗ - Muscle weakness
I went from only being able to lift 5 lbs from chest height and 1 from off the floor
In context ↗ - Neuropathy & tingling
I'm fat because of antipsychotics and nerve pain meds.
In context ↗ - Anxiety & low mood
I started it while moderate-severe and it had no impact on my severity but substantially helped my depression
In context ↗ - Breathlessness
I experience it due to pots. ... It's called air hunger.
In context ↗
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