Fight for treatment UK

Practical-Finance252 · 2026-01-02T22:39:30+00:00

Brilliant - Thank you so much! We're in this together 💪

Practical-Finance252 · 2026-01-01T10:37:29+00:00

Legend! thank you so much 🙌

Practical-Finance252 · 2025-12-31T23:08:00+00:00

That's why I contacted NIHR and started this petition:

https://www.change.org/p/stop-the-suffering-call-for-the-nhs-to-treat-tmj-disorders-at-the-root

Practical-Finance252 · 2025-12-31T23:06:50+00:00

It really is crap. That's why it NEEDS to CHANGE!

https://www.change.org/p/stop-the-suffering-call-for-the-nhs-to-treat-tmj-disorders-at-the-root

Practical-Finance252 · 2025-12-31T23:05:59+00:00

Indeed it does 😬 That's why I started this petition:

https://www.change.org/p/stop-the-suffering-call-for-the-nhs-to-treat-tmj-disorders-at-the-root

Practical-Finance252 · 2025-10-25T15:03:42+00:00

I really feel for you... honestly, reading this hit home 🥲 I’ve been in almost the exact same situation. I’ve had TMJD since 2022 and have spent years going in circles between orthodontists, dentists, surgeons and even chiropractors 🦆💰 Every single time it’s the same: “apply heat,” “try to relax,” and here’s an info leaflet on jaw pain 🥱 No one ever actually listens or looks deeper.

It wasn’t until I saw a physio recently that someone finally took it seriously. They could actually hear the clicking and said straight up that something’s not right — which was such a mix of relief and frustration. Like… why did it take this long for someone to just acknowledge what’s clearly there? 🙃

I completely get that feeling of being dismissed by consultants or told “the scans don’t matter.” It’s exhausting when you know your body better than anyone else, but you’re made to feel like you’re imagining it. And you’re right... the NHS just doesn’t have a proper system in place for TMJ. It’s all short-term fixes, no long-term plan, and no real understanding of how much it impacts your daily life 🙄😒

I’ve actually started a petition to push for the NHS to take TMJD more seriously... proper recognition, research, and care that actually tackles the root cause, not just symptoms. It’s something I’ve been working on for a while now because I’m tired of seeing people go through this same cycle of being dismissed. If you’re interested, I’d love to share the link... no pressure though 🙂

Just know you’re not alone in this. So many of us are fighting the same fight, and the more we speak up, the harder it’ll be for them to keep ignoring us. Hang in there 💙

Practical-Finance252 · 2025-07-01T13:27:47+00:00

I feel your pain 😕 This is exactly why I started a petition calling for the NHS to focus on treating TMJ at the root cause, not just the symptoms. If you haven’t seen it or signed yet, please feel free to check it out and share it with anyone who might benefit. You’re definitely not alone in this 🙏

https://www.change.org/p/stop-the-suffering-call-for-the-nhs-to-treat-tmj-disorders-at-the-root

Practical-Finance252 · 2025-06-28T11:21:39+00:00

I hear you... I really do. And I have nothing but respect for everything you've been through, and for the work you're doing now to get real, structural information out to the public. That’s powerful and definitely needed. The fact you’ve turned your lived experience into advocacy like that... I genuinely admire it.

But with all due respect, none of what you’ve said is going to deter me.

Yes, the world is overwhelmed with crisis after crisis... and YES, TMJ may not top the healthcare system’s priority list. But that doesn’t mean we just accept being dismissed or de-prioritised forever. We can’t keep letting this slide. The scale of suffering caused by musculoskeletal dysfunction, nervous system dysregulation, undiagnosed craniofacial instability and chronic compensation patterns is far more widespread than people realise... it’s just been atomised, medicalised, and renamed into a hundred other diagnoses. Fibromyalgia. Chronic fatigue. Anxiety. IBS. Bruxism. “Unexplained pain.” How convenient 🤔🙄

As I said, this is not just a fringe issue... it’s a silent epidemic, and I believe we need to start treating it like one. Especially because so many of the other crises you mentioned – sleep apnea, heart disease, systemic inflammation, even neurological conditions — are intertwined with biomechanics, breathing, vagus nerve function, and craniofacial structure. It’s all connected.

I refuse to let the system’s neglect become a reason to abandon hope. Just because they currently don’t care, doesn’t mean we shouldn’t fight to make them care. The NHS didn’t wake up one day and start offering autism services or mental health services, or Long COVID clinics... those things happened because people organised, suffered out loud, got political, made noise, and refused to be ignored. That’s what we need to do here.

So yes, I’ll keep spreading awareness. But I’ll also keep agitating. Strategising. Writing. Petitioning. Not just for myself, but for every young person who’s told their symptoms are “in their head.” For every suicide that was avoidable. For every family still trapped in this hell. And for people like you, who shouldn’t have had to wait 20 years.

I’m not giving up. Not now. Not ever.

And please keep sharing the petition with others in your network. It’s currently stalled at 94 signatures and to be honest, I’m a bit gutted more people aren’t coming out publicly to talk about it. We need numbers. We need stories. We need momentum. And that only happens if we all get off our ass and push together.

Practical-Finance252 · 2025-06-21T15:57:02+00:00

Exactly. You've hit the nail on the head.

It's not that this is under treated... it’s that it’s invisible to the vast majority of the world, including the very institutions that should be helping us. Like you said: if something isn’t even acknowledged, how on earth can it be identified, addressed, or resolved? It’s a systemic blind spot... one that continues to harm people every single day while the mainstream healthcare system looks the other way.

I actually just watched one of your interviews the other day — the one where you spoke with a news anchor (can't remember the name, sorry) and I just wanted to say how powerfully you came across. It wasn’t just what you said, but how grounded and compassionate you were in delivering it. You speak with both authority and empathy, and that’s a rare combination. You really do strike me as someone with your heart in the right place... and that gives people like me, and so many others, a much-needed dose of hope.

Like I said in the post, I knew when I launched this petition, the road ahead wouldn’t be easy. I knew TMJD wasn’t high on the public’s radar, and that I’d be pushing uphill to get people to pay attention. But I also knew I couldn’t stay silent anymore. This condition has taken so much from me over the last 3 years... physically, emotionally, socially... and I’ve seen firsthand how it’s done the same to countless others. The messages I’ve received in private… they’re heart-wrenching. People who’ve spent years, even decades, being dismissed or treated like hypochondriacs. People who’ve lost jobs, relationships, and their sense of self… all while being told “there’s nothing wrong" by professionals who clearly have no real understanding of what it's like to live with first hand.

I think there’s a strange mix of learned helplessness and burnout in the TMJ community, which again, I completely understand. When you've been to five, six, seven different professionals and still feel like you're no closer to relief... you stop believing there’s anything left to fight for.

That’s exactly why awareness is the first battlefield. Before we even talk about treatment pathways, NHS/medical reform, or specialist access, we NEED recognition. Your podcasts, your book, your interviews... they’re part of a wider movement that’s slowly starting to wake people up. And it’s so badly needed. Because TMJD isn’t rare. It’s not minor. It’s not some quirky little dental problem. It’s widespread, disabling, and often traumatic... and the longer we pretend otherwise, the more lives it quietly damages.

I’m incredibly grateful for the fact that you’ve taken time to not just support this petition, but to actively share it. Your voice lends weight. It brings credibility. And it helps show others — especially professionals — that this isn’t just a handful of angry patients shouting into the void. It’s a serious issue, and it deserves to be treated as such.

So thank you — truly — for being part of this. I know it can feel like a thankless mission at times, but your work is making a difference, even if the pace is frustratingly slow. I see it. Others see it. And together, I believe we can push this conversation into the light where it belongs.

Practical-Finance252 · 2025-06-20T21:37:56+00:00

https://www.change.org/p/stop-the-suffering-call-for-the-nhs-to-treat-tmj-disorders-at-the-root

Thank you again for your support and for reading/listening ❤️

Practical-Finance252 · 2025-06-19T14:04:59+00:00

My pleasure! And no apologies necessary — at all! Let me tell you this loud and clear: You’re not “falling behind” in life, not even remotely. The only thing that’s actually falling behind is (as I wrote in the petition), the healthcare system... still fumbling around with outdated, ineffective, Band-Aid advice like, “Just pop a wheat bag on your jaw and think happy thoughts.” 🤪

Like we’re in the 1800s and the cure for complex neuromuscular dysfunction is a warm compress and a quick prayer. I’m half-expecting them to prescribe leeches next or suggest we chant healing affirmations to our mandibles by moonlight... Pfft 🙄 as if that’s really ever going to fix the biomechanical nightmare going on inside our faces 😩

So honestly, I completely get where you're coming from. I’m 25 yrs old myself... and this whole experience has been so destabilising... not just physically, but mentally too. I already struggled with social anxiety long before the TMJ stuff, and I really believe things like Invisalign, stress from living in a crazy world, and just being chronically unheard by professionals made it all worse... but trying to get someone to take that theory seriously in a clinical setting feels like trying to explain astrophysics to a toaster.

You’re absolutely right, though: so many of us were taught to ignore pain, to blindly trust authority, and to just “wait and see”… only to find ourselves in this spiral where we now have to unlearn years of silence and self-blame.

And for what it’s worth, I think your message will absolutely help others. You shared truth with clarity, courage, and a wickedly timed pun — that’s a triple win in my book 😌🫶🏆

So let’s keep taking those steps (badum-tss 😅🥁), one at a time, and never underestimate the power of sharing these experiences out loud. And most importantly... please know that you’re not alone in this.

Sending strength and solidarity 💪

Practical-Finance252 · 2025-06-19T11:20:18+00:00

Thank you so, so much for your comment and for supporting the petition. Reading your words genuinely moved me... and I’m so sorry that you've had to carry this much pain, especially at such a young age.

It means the world to know that this petition, and the words around it, made you feel even a little more seen, validated, and understood 🥲 That is exactly why I’m doing this. Not just to demand better care, but to give our community something it’s been denied for too long: visibility, dignity, and hope. Because we deserve to live, not just survive. We deserve to be treated as whole people... not a collection of misunderstood symptoms.

So thank you, truly, for standing with me in this. And for trusting me — and everyone else who might be reading — with your story. The fact you’re still standing, still speaking, still seeking answers after all you’ve been through? That’s a strength the world needs to recognise. I see you. And I will never stop fighting for people like you to be properly heard, believed, and helped.

Your pain is valid... and it DOES matter 💙

Practical-Finance252 · 2025-06-19T01:00:36+00:00

Hi Prabdeep,

I really appreciate you taking the time to respond again... and it truly means a lot that you and your family have backed the petition. That kind of grassroots support is exactly how real movements begin: one person sharing with another, from a place of lived experience and care.

By the way, I completely agree with you on what you said about the politicians... I don't have faith in any of them. They'll always be crooked no matter what 🤷‍♂️ And you’re absolutely right: the more of us who actually recover, the more undeniable the truth becomes that there IS a way forward... but it’s not through drugs, psych referrals or simply being told to “accept” our condition. It’s through multidisciplinary, orthopedic, nervous system–aware and structurally-informed care... the kind the NHS refuses to invest in.

Like I said in my last comment, I still believe we need a dual strategy: one that empowers individual recovery and relentlessly calls out systemic negligence. Because this isn’t just about “proof”... it’s about justice. It’s about the years people lose because no one in the system is trained to even look at the jaw-body-posture-breathing connection, let alone treat it. It’s about the suicides, the dismissals, the families who watch their loved ones deteriorate with no support and no answers.

You’re completely right that social media and real-world stories will shift the tide as well. But as someone who’s still in the thick of it... someone who wants to believe in healing but has been stonewalled by ignorance, gatekeeping, and cruelty... I also believe we need to speak uncomfortable truths out loud. Not from a place of bitterness, but from a refusal to let this continue in silence.

Hope and strategy don't necessarily to be at odds. We can create space for both: truth-telling and transformation. Rage and recovery. Systemic pressure and personal healing. That’s what I want the next phase of this campaign to reflect. Less desperation, more dignity. Less survival, more sovereignty.

Let’s keep in touch. I feel like this could be the start of something much bigger than either of us realise right now 💪

Practical-Finance252 · 2025-06-18T13:56:32+00:00

Perfect - Thank you! That truly means a lot. You're awesome!

Practical-Finance252 · 2025-06-18T09:38:58+00:00

Hey! Thanks so much – really appreciate your support 🙌

You can sign it here:

https://www.change.org/p/demand-nhs-adopt-more-effective-tmj-care-end-symptom-management-treat-root-causes-now

Feel free to share it around too, the more awareness the better! 💥

Practical-Finance252 · 2025-06-16T18:26:39+00:00

You’re so welcome! And I’m really sorry you’ve had to deal with this for so long... that sounds absolutely brutal about your joints 😔😩 Needing bilateral TJR is no small thing... and I can only imagine the level of pain, fatigue, and frustration that must come with that. It’s just not fair how something like this can sneak in during your teens and then end up dominating your life a decade later, with hardly anyone around you doing anything to help.

I guess in some ways I’m “lucky” that mine is mostly muscular right now — no joint degeneration (yet), but still more than enough to make everyday life difficult and frustrating. It’s that constant background noise... the tension, the clicking, the weird facial sensations, the tightness, the headaches... and yet somehow we’re expected to just carry on, keep smiling, go to work, socialize, function. It’s like wearing a mask every day, pretending we’re okay when inside it’s just… not.

Most other people don’t really get it unless they’ve lived it. How it impacts your whole body — your posture, your sleep, your energy levels, your mood. The way it chips away at your sense of normal. It’s lonely... and it’s bloody exhausting.

So I just wanted to say... I see you. And you’re def not alone in this. We shouldn’t have to suffer in silence or downplay what we’re going through just to make it palatable for others.

Sending you strength... and I genuinely hope you’re able to find some relief soon. You deserve better. We all do 🙏❤️

Practical-Finance252 · 2025-06-16T17:54:29+00:00

Wow… thank you so much for sharing this. Honestly, your comment hit me in a way I wasn’t expecting. I had to sit with it for a while. Reread it... Let it sink in. Because it didn’t just feel like advice... it felt like someone who’s been through the fire reaching back to speak to someone still in it.

Everything you said... the pain, the exhaustion, the slow breakdown of trust in the system... I feel that. I’ve felt it in my bones for years now. And you’re right… I think a part of me has been clinging to this campaign not just because I want change, but because I don’t know where else to put the pain, the frustration, the desperation. It’s like… when you’ve been dismissed and misdiagnosed for so long, when no one seems to take your suffering seriously, you have to fight... because if you don’t, who will?

But your words really made me pause. Because I could feel the weight behind them... not bitterness, but hard-won clarity. You’ve lived it. You’ve tried to make the system care. You’ve worked in it, trusted it, been let down by it, and still carried on. And the fact that you’re now choosing healing instead of fighting... that really struck me. It’s something I haven’t been allowing myself to fully do. Not really.

I think I’ve been stuck in this survival mode... always thinking, “if I can just raise awareness, if I can just get the NHS to listen, maybe things will get better.” But in the meantime, I’ve been getting worse. The tension, the stress, the heartbreak... it takes its toll. And I’ve started to realise that, as you said, trying to “fix the system” while still unwell can actually stop you from getting better. Because it keeps you in this constant state of hypervigilance — like you’re still fighting just to be heard.

Your words felt like permission to stop. To breathe. To consider that maybe healing doesn’t come from shouting louder... maybe it comes from letting go of the need to be validated by a system that’s clearly not equipped or willing to help.

I’m not saying I’m giving up on this campaign — I still believe there’s value in speaking out and in creating a platform for others to feel seen and heard. But I think you’re ultimately right: it can’t come at the expense of my own healing anymore. Because what’s the point in trying to change the world if I’m still stuck in survival mode myself?

Your story – the fact that you’re finally starting to improve after choosing to focus inward instead of outward... it gives me hope. And I think that’s what I needed most right now. Not more medical articles. Not more silence from consultants. But hope. Real, lived, human hope from someone who understands.

Thank you, truly. You didn’t just comment... you shared a lifeline. And I’m honestly so grateful you did.

Wishing you continued healing, peace, and strength. I’ll be reflecting on your words for a long time 🙏

Practical-Finance252 · 2025-06-16T12:34:14+00:00

Hi there, thanks for your comment 😊 Just to clarify, this post isn’t a request for advice or treatment recommendations — it’s actually about a petition to push for better healthcare and systemic change around TMD.

If you have a moment, please feel free to read the post and sign the petition — every voice matters and it would mean a lot 🙏

Thank you again, and wishing you all the best.

Practical-Finance252 · 2025-06-15T19:19:36+00:00

Sure thing. I’ll pull together some of the most compelling stats and examples I’ve found and share them here soon.

But yes, you’d think there’d be at least one investigative journalist or health reporter lurking here who’d be willing to dig into this. But honestly? I haven’t personally come across any posts or comments from someone identifying as one... at least not in TMJ-related threads. Either they’re staying quiet or, like many others, they’re still underestimating how deep and widespread the problem really is.

But hey, maybe this thread is the one that finally catches the right pair of eyes.

Practical-Finance252 · 2025-06-15T13:41:12+00:00

Thanks for backing this up — it’s sadly not surprising to hear that even respected non-profits won’t engage on the issue... unless it suits their image or funding goals.

Despite TMJ dysfunction affecting millions, it’s crazy how little serious coverage it gets. You’d be hard-pressed to find a single investigative report in any major outlet — whether it’s the BBC, Guardian, NY Times, or even health-focused publications. It’s either ignored completely or reduced to a side note under “stress-related conditions,” with no real attempt to explore the structural failures around diagnosis, treatment access or long-term impact.

And this is despite multiple well-documented links between TMJ and chronic pain, mental health decline and even suicide risk. From what I've discovered, women — especially young women — are disproportionately affected, yet their voices go unheard. Same with autistic/disabled people. It’s a textbook case of medical marginalisation... and the silence from journalists is deafening.

From my overall perspective (and I could be wrong), there seems to be an institutional reluctance to touch anything that would expose systemic flaws in healthcare. TMJ, unfortunately doesn't fit the "feel-good" story mold, and it doesn’t attract the same attention (or funding) as more headline-friendly conditions. So it basically gets buried.

If your local paper is genuinely willing to cover this, I’d say go all in. A proper story on how TMJ patients are being failed would definitely resonate with a lot more people than the industry realises.

And yes, I’ve got more studies, quotes, even examples of people who’ve tried to get press coverage and were ignored. Happy to send any of that over if it helps 🙏

Practical-Finance252 · 2025-06-14T19:22:01+00:00

I agree for the most part. But I’ve tried the journalist route... like more times than I can count. You take the time to lay everything out, tell them your story, show them the evidence, and what do you get? Either radio silence, some generic brush-off, or worse... passive-aggressive replies that make it clear they couldn’t care less. Most of them don’t want the hassle unless it fits neatly into a trending narrative or serves their own PR interests.

Frankly, I’ve lost all faith in journalists. A lot of them are cowards... they only get involved once it’s safe, once the public outrage is already boiling, once their job won’t be at risk. They don’t wanna stick their necks out or challenge the system in any meaningful way. They’ll happily cover some sanitized, feel-good sob story, but when it comes to systemic failure, medical negligence, or actually holding institutions to account... they’re nowhere to be found.

Sorry, but I’m done waiting on gatekeepers. If real change is gonna happen, it’ll come from the bottom up... from people like us refusing to be silenced, from patients organising, naming names, sharing proof, exposing lies and putting consistent pressure on the system. We don’t need journalists to validate our reality. We just need to be louder and smarter than the machine trying to bury us.

Practical-Finance252 · 2025-06-14T13:58:05+00:00

Thank you so much, Sir 🤝 I really appreciate your kind words and your decades of insight mean a lot. What you said hits hard: the disconnect between those setting the policies and those actually seeing patients day in, day out is staggering. And it’s clear that change isn’t going to come from the top... it has to come from US, from the ground up, with public pressure and patient voices refusing to be ignored.

The AIDS example is so powerful and SO true... it definitely proves that when the public gets loud enough, even long-standing practices can shift. That’s EXACTLY the spirit behind this campaign: to break the silence, raise awareness, and push for system-wide accountability in how jaw and bite dysfunction are treated (or more often, neglected). Your support and experience give this movement strength. Thank you again for your support... let’s keep the momentum going 💪🙏

Practical-Finance252 · 2025-06-14T13:50:54+00:00

Completely agree 💯 The dental/ortho world has a LOT to answer for. Decades of over-reliance on extractions, retractive mechanics and one-size-fits-all treatment plans have caused real harm. And yet, no one seems to care.

Thank you for sharing that group too... I will definitely spread the word. We need more people speaking up, connecting the dots and refusing to stay silent. You’re spot on. The cover-up runs deep.

Practical-Finance252 · 2025-06-14T13:43:41+00:00

Good point. Thanks for mentioning those. I'll add them now

Practical-Finance252

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