Housebound with ME/CFS and severe face and jaw pain, now worse again after crashes
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Nov 2025
In their words
- Condition: ME/CFS
like every single time since getting ME, so 5 times i‘d guess
In context ↗ - At worst: Severe
I'm almost severe now. ... I am housebound and most of the day in bed.
- Now: Relapsed
I got a bit better and then over did it ... I'm declining and I can't take this intense pain anymore.
Read from 29 of their posts and comments; links to the 17 this page draws on
Summary
A 17-year-old former competitive athlete with ME/CFS, housebound and in bed most of the day, had severe face and jaw pain beginning in 2024. Dentists found only TMJ; antibiotics helped briefly and painkillers and gabapentin did little. Crashes after dental appointments, a friend's visit and screen use left her baseline lower, and darker autumn made her more exhausted. By November 2025 she was in a strong crash, declining.
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What they tried
What they credit
Also tried
Their words about each treatment
- splint / night guard · Not said
I have tmj and clench a lot but I wear a night guard
In context ↗ - Novalgin (Metamizol) · No change
No painkillers helped strongest was 750mg novalgin/Metamizol.
In context ↗ - Naprexon · No change
Novalgin, Naprexon, Ibu do not help.
In context ↗ - Antibiotic (third course) · Helped
The antibiotics helped but it got worse when they were gone again.
In context ↗ - gabapentin · No change
I'm 17 and take 100mg 3 times a day. I tolerate it pretty good ... Gabapentin doesn't do much as well.
- meditation and breathwork · Helped
I always do a meditation or breathwork for at least 10min to get me into a deep mental rest and then i just lie still as long as i can.
In context ↗ - garmin vivoactive 5 · Helped
I love my garmin vivoactive 5. It helps me a lot and totally worth the price for me :)
In context ↗ - acupressure mat · Helped
I think it's calming, and I like the feeling tbh.
In context ↗ - medical stockings · Not said
I use grade 2 for POTS but i'd recommend starting with grade one and see how you handle the pressure.
In context ↗ - pacing · Helped
over time i kinda found my own system that helps. You need to have periods of complete rest in your day.
In context ↗ - aggressive rest · Not said
I now want to try aggressive rest. I started doing meditations again and completely cut out games and the discord again.
In context ↗ - online therapy · Not said
I have a great therapist on my side that I see online! :)
In context ↗ - Q10 · Helped
Q10 helped me a lot in combination with nadh.
In context ↗ - amoxicillin · Helped
had the same thing happening multiple times (like every single time since getting ME, so 5 times i‘d guess)
In context ↗ - weighted anxiety plushy · Helped
i have a weighted anxiety plushy and it really helps me!
In context ↗
Approaches: Supplements
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. The chart starts 18 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2023 | became ill after years as a competitive athleteYep, I (17) was an athlete, I did calisthenics and later weightlifting for a few years as well as competitive rowing.In context ↗ | Not stated | |
| March 2025 | crashed from dental appointments, extreme face and tooth painI totally crashed and my condition is extremely unstable so far, so I can't go to the doctor again. I'm moderate - severeIn context ↗ | Severe | |
| spring and summer 2025 | slowly gained a little energy and could do small thingsWhen spring and summer started i slowly got a tiny bit more energy. I could do some things again.In context ↗ | Severe | |
| August 2025 | big crash after a friend's visit and hours of gamingSo now here I am in a really bad crash since long, feeling like dying.In context ↗ | Severe | |
| August 2025 | slightly better cognitively after starting aggressive restRight now i am slightly better cognitively. i am housebound and lay down most of the day.In context ↗ | Severe | Radical rest |
| August 2025 | energy draining as autumn cameIt's cooling down a bit, days are getting shorter, it's darker outside and i feel my energy draining again.In context ↗ | Severe | |
| October 2025 | strong crash after pushing herself to the dentisti've pushed myself to the dentist again in hopes they may find something. Well they didn't and now i'm in a quite strong crash again.In context ↗ | Severe |
Adverse events
- Gabapentin (Neurontin)“I get gabapentin and it is already making me rlly tired, foggy and dizzy” In context ↗ Side effects
- “My tmj got way worse after the anesthesia and i feel like the fillings are still messing up my bite.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
i could technically do all of that but i leads to PEM or uses up energy i could use to do things i enjo.
In context ↗ - Pain & fibromyalgia
The pain is abnormal and radiates everywhere.
In context ↗ - Neuropathy & tingling
It feels as if all the dental nerves are on fire
In context ↗ - Sleep problems
I can no longer do anything and hardly sleep.
In context ↗ - Brain fog
Right now i am slightly better cognitively.
In context ↗ - Anxiety & low mood
and i literally get anxiety when i do nothing.
In context ↗ - POTS & dysautonomia
I use grade 2 for POTS
In context ↗ - Headaches & migraine
My head hurts so bad I have all the crash symptoms
In context ↗
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