ME/CFS
Severe → much betterIll 5 years before improving or writingNeeds ongoing treatment
Bedbound or housebound with ME/CFS, now mild and working, thanks to pacing and propranolol
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
got symptoms at 13 (2020) and then diagnosed with hashimotos, then cfs early 14 years old
In context ↗ - At worst: Severe
spent 14-early 16 in absolute hell, bedbound to bedroom bound to house bound, walking canes, wheelchairs, school exemptions, chronic pain, constant brain fog and overwhelm
In context ↗ - Now: Much better
I’m now mild ... I’m still in pain, I don’t leave the house other than the 4(?) appointments i have during the week to help with my pain
In context ↗ - Began after: stress or burnout
Then I collapsed a month after turning 14 after pushing myself over and over.
Read from 74 of their posts and comments; links to the 27 this page draws on
Summary
Pebble 20332 fell ill at 13 in 2020 and was diagnosed with ME/CFS at 14, spending about two years bedbound or housebound with chronic pain and brain fog; POTS was diagnosed at 16. From mid-2023 she improved, crediting disability support, propranolol, a personal trainer and exercise physiologist, rollerblading and pacing. By 2025 she described herself as mild, working short shifts and going to the gym, with pain and occasional PEM remaining.
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What they tried
What they credit
Also tried
NDIS disability support· Helped a lotNeuromuscular Therapy· HelpedTetris on iPad· Helpedmarijuana (edible and CBD/THC oil)· Helped · wore offLyrica· Helped · wore offliquid melatonin· Helpedshaving my head· Helpedbidet· Helpedlash extensions· Helpedrollerblading· HelpedSlip Silk sleep mask· HelpedCBD oil on its own· No changemeditation and breath work· No changemassage· No changePanadol· No changeibuprofen· No changeLDN· Worseended· Worsealcohol· Worsecounseling· Not said
Their words about each treatment
- LDN · Worse
ive tried ldn i had like the absolute lowest amount and it gave me the worst headache of my life so i dont think it works for me?
In context ↗ - Trigger Point Therapy · Helped
i’ve also been doing Trigger Point, Neuromuscular and Bowen Therapy which I think is what’s helping the most
In context ↗ - Tetris on iPad · Helped
i got tetris on my ipad and it helps with the brain fog a little
In context ↗ - marijuana (edible and CBD/THC oil) · Helped
Marijuana eventually stopped working for me and was a random trial an error thing sometimes took the edge off, sometimes helped my brain work better, other times did nothing
In context ↗ - CBD oil on its own · No change
CBD on its own did absolutely nothing
In context ↗ - meditation and breath work · No change
i do meditation, massage, breath work, everything. nothing works, nothing changes just always tense and in pain
In context ↗ - Panadol · No change
panadol and ibuprofen don’t work
In context ↗ - ended · Worse
i’ve tried ended but it didn’t do anything pain wise and just made me feel worse
In context ↗ - Lyrica · Helped
I’ve recently went on lyrica and it has helped with my pain not fully at all but to the point it’s not horrible and has really helped with my pots!
In context ↗ - liquid melatonin · Helped
liquid melatonin is the only sleeping med that doesn’t make me crash. gets me to sleep and can get me up at a decent time too!
In context ↗ - shaving my head · Helped
the number one thing that turned my life around from having to be bathed once a week by my mum to being able to slowly but still shower myself was shaving my hair off
In context ↗ - bidet · Helped
bidet changed my life
In context ↗ - lash extensions · Helped
I haven’t felt the need to leave the house in makeup which has really helped with getting ready and prevents crashes when leaving the house.
In context ↗ - NDIS disability support · Helped a lot
Got NDIS (I’m Australian) support in June 2023. Helped me gain independence and ease the mental health issues that come from chronic illness.
In context ↗ - rollerblading · Helped
Rollerblading also gave me an accessible social circle, gave my identity back and light physical activity
In context ↗ - gradual walking and stretching · Helped a lot
Working out has only started working for me after 6months+ of gradual walking and stretching. I was in a wheelchair and slowly started walking again 6months ago
In context ↗ - pacing · Helped a lot
I have learnt to pace myself properly and I do now have disability support which I personally think has been the biggest help
In context ↗ - alcohol · Worse
i was able to run around, i had no pain in my back it was amazing! the day after though and the day after that was hell
In context ↗ - Slip Silk sleep mask · Helped
bidet, good sleep mask, even a little bit of social connection, very very very gradual and light movement and slowly improving over time
In context ↗ - personal trainer and exercise physiologist · Helped a lot
Building muscle, moving more, socialising (which helped with my mental health) was LIFE changing, helps with the chronic pain.
In context ↗ - counseling · Not said
I need to go to counseling (again) for managing my memory but i dont think i have enough in my plan to do that
In context ↗ - time and growing up · Helped
over time and just growing up and maturing I have learnt to pace myself properly
In context ↗
Approaches: Alternative therapies · Exercise and activity · Pacing · Physiotherapy and rehab
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 |
|---|---|---|
| 2020 | health began declining at 13, still at schoolthen at 13 my health started going downhillIn context ↗ | Mild |
| 2021–2023 (age 14–16) | bedbound to housebound, canes and wheelchair, left schoolbedbound to bedroom bound to house bound, walking canes, wheelchairs ... Could barely shower/care for myself.In context ↗ | Severe |
| June 2023 | started getting NDIS disability supportGot NDIS (I’m Australian) support in June 2023. Helped me gain independenceIn context ↗ | Moderate |
| May 2024 | sciatica returned, could not walkI can’t walk, i’m in even more pain, it only stops when i sit downIn context ↗ | Mild |
| June 2024 | started personal trainer and exercise physiologist through NDISBuilding muscle, moving more, socialising (which helped with my mental health) was LIFE changingIn context ↗ | Mild |
| September 2024 | two bad days after drinking at a partyi drank again but this time much happier ... the day after though and the day after that was hellIn context ↗ | Mild |
| January 2025 | crashed after New Year party and drinkingI am recovering from being really stupid at New Years.In context ↗ | Mild |
| July–August 2025 | describes herself as mild, still in pain, working once a fortnightI’m now mild and I would say getting NDIS absolutely helped get me to a MUCH better placeIn context ↗ | Mild |
Adverse events
- Low-dose naltrexone“i’ve just started LDN, 0.1 or something very tiny as i got an excruciating headache from 0.5” In context ↗ Side effects
- Low-dose naltrexone“ive tried ldn i had like the absolute lowest amount and it gave me the worst headache of my life ... Was crashed for ages and I was on the absolute lowest amount you could have!” Side effects
- Pregabalin (Lyrica)“Lyrica stopped working and is making me sleep like 18 hours” In context ↗ Side effects
- Pregabalin (Lyrica)“lyrica made me feel a lot worse and more groggy, i don’t really recommend it anymore” In context ↗ Made symptoms worse
- “i’ve tried ended but it didn’t do anything pain wise and just made me feel worse” In context ↗ Made symptoms worse
- “THC on its own made me paranoid and dissociate” In context ↗ Mood or psychiatric effects
- “it now just makes me paranoid and high” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
I still have chronic pain and occasional PEM which results in brain fog
In context ↗ - Brain fog
my memory is still horrible, can concentrate and think clearly but my memory hasn’t gotten better really
In context ↗ - POTS & dysautonomia
propanalol seemed to help stabilise my heart (POTS but I still have mild POTS)
In context ↗ - Sleep problems
go full reverse (asleep 4am-3pm)
In context ↗ - Headaches & migraine
my brain physically hurts
In context ↗ - Light & noise sensitivity
I use earbuds and sensory earphones, still loud :(
In context ↗ - Anxiety & low mood
i was so severely depressed and in so much pain that i was really close to drinking all of my parents alcohol
In context ↗ - Vision problems
When i’m crashing hard my vision gets really bad
In context ↗ - Muscle weakness
your body is slush, it is hard to hold your posture, your movement is slow and weak
In context ↗ - Neuropathy & tingling
it’s back just on the left side of my hip and shoots down my leg if i try and walk
In context ↗
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