u/ViviTheWaffle

I’ve never posted or interacted here so I’m sorry if this kind of thing isn’t allowed (I’ve read the rules as far as I can tell I should be okay but, I worry I may have missed something regardless)

I’ve always been someone with a boatload of medical conditions, physical and mental. IBS, Autism, Gender Dysphoria, Chronic Fatigue, ADHD, severe Hypermobility, the works. But somehow I managed to work through them all.

Towards the end of 2022 though , I started developing these debilitating bouts of pain that emanated from my jaw. At first it was assumed I had TMJ, but I given every treatment for it and nothing improved it (in fact I suspect some treatments like splint therapy actually made it worse).

Over the years it only got worse. It went from monthly to weekly to daily to literally inescapable. And no one to this day has been able to tell me what is wrong with me. I’ve seen every specialist I can imagine — dentists, maxilofacials, prosthodontists, physiotherapists, neurologists, and of course pain specialists. Absolutely *none* of them have been able to find any solution or provide any relief to me. And with every failed treatment or specialist the more my faith in the medical system began to crumble.

And frankly I get the sense that most of them are entirely unprofessional. I spent more than six months on a waiting list for the supposed best pain doctor in my area. I go into my first consult and instead of asking me anything relevant the very first question he asks to “break the ice” is “so, what exactly is the difference between being gay and trans?” Suffice to say he was inept at his job and now I’m on another big fucking waitlist to see another guy.

All my tests come back normal, all my imaging comes back normal. As far as anyone can tell, there is absolutely nothing physically wrong with me.

It’s been four years and I’m only 22. And I’m losing hope. Suicidal thoughts went from being something ridiculous to something I have on the daily. If I lived in a country where firearms were readily available, I’d have used them on myself. I am only continuing because there are people who love me I know would be sad if I were gone, and that I have no easy way out.

At this point, I feel like I’ve just exhausted every single option I have. And whenever something doesn’t work, the doctors always give me this look as if I’m some kind of helpless anomaly that’s a lost cause. Sometimes they refer me to do the same thing over and over again because they just can’t fathom that it didn’t work the first time. I’ve done pain management courses and they didn’t help, I’ve done physiotherapy and it didn’t help, I’ve done literally everything I feel like is available and nothing has done anything.

My only escape are of course opioid drugs. I am dependant on them now because they are the only reliable way I can escape the pain, and of course it’s also the one thing doctors want me off of. I once got screamed at by a GP that I was an addict and that a 22 year old should never be taking narcotics. Ever since then I’ve been scared of the medical system and it’s even harder to bother to even try to keep moving forward. And I know it’s not the permanent solution but it’s been so many years and it feels like the restrictions are just there to make me suffer in pain.

The truth is, I don’t know how much longer I can go on for. I don’t know how much longer I can take this. The past six months I have done nothing but get out of bed, eat, and sleep. I can barely leave the house because the pain is so debilitating.

And yet, I have nowhere to go. No one who can help me. At least no one who I can find. I just want someone, anyone to show me some sympathy and actually make some progress with me but instead I feel like I’m just being ignored and treated like a lost cause.

I’m sorry if this is an incomprehensible stream of consciousness but I’m closing in on my limit. How can I just keep waiting for the right doctor when the very act of living is never ending literal pain?

I just, don’t know where to go. I don’t know what to do, I don’t know if I even have a future when I’ve tried literally everything I can. And I guess I just, am grasping at straws here to see if anyone maybe can offer me comfort or suggest something, because I don’t know what else to do.

TLDR: I am a 22 yo Australian with a four year long undiagnosable chronic pain condition that cannot be treated with any conventional method and I feel I have run out of options, and I’ve fallen into utter despair. I need help but I have no idea how to proceed.

And for anyone who has read all of this, thank you so much. I can’t describe how much it would mean to me to know someone actually cares enough to do that.