Which conditions are far worse than most people realise?

[LittleRobins]

I’m curious as to what people suffer from, or have seen others suffering from, that is actually much worse than people believe? There are so many conditions that don’t seem to be fully understood until people go through it themselves.

For me it’s TMJ disorder (bruxism). I was told around 15 years ago by my dentist that she could tell I was clenching my teeth and needed to wear a bite guard. I did so (and have done so ever since) but didn’t understood at the time how many issues this causes. I’m now in a position where I have lost several teeth (clenching causing a swollen periodontal ligament and eventually killing the teeth and/or causing cracks so root canal is not an option). I am in pain with my teeth and jaw every day.

Around 80% of nights I either get no sleep at all or around 3 hours sleep due to the pain that starts when I clench upon getting into a deep sleep. I live in constant fear of losing more teeth. I am due to have jaw surgery soon (plus Botox) which has an horrendous recovery which I am dreading but hoping in the long-term will benefit. The discs in my jaw are both in completely the wrong place due to clenching which leads to jaw locking and has now started to affect my nerves so I get random numbness in my lips. I have two toddlers who I feel immense guilt for because I feel like I’m not being the most-present mum I could be because the pain is hard to push to the side.

But all of this has got me thinking, what other conditions are people going through that are worse than most others believe?

@Seawolves
That must be heartbreaking for you. Your poor son 💐❤️

My goodness you’re lucky. I had one session of Botox on the NHS about ten years ago which failed as they injected the wrong muscles. By the time I was re-referred I was told the NHS don’t offer it anymore. Can I ask where aboust you live, are you in England?

Me too. Mine with pain down 1 side of my head, it feels like my head is splitting in 2. Sometimes vomiting, but the worst pain that makes me feel like I would rather be dead it's that bad. I have a nasal spray now that really helps. I hate it when I hear people say they have a bit of a migraine, there's no such thing!

South Yorkshire. Like other none related treatments I wonder if it’s based on different trusts?

That’s what I was thinking. Maybe I’ll try asking/begging again and see what they say

I have an appointment today with a respiratory consultant.
They found an enlarged ventricle in my heart.
It's to do with my sleep apnea.

I'm just so sick of my body letting me down.

Hope it went ok @Worried198423

Hope it went well. Agree on the body. I’d love to be more elegant but mostly don’t care about what I look like. I just wish my body and brain worked normally.

Can I just thank whoever mentioned a hip labral tear on this thread?

I read it and thought, what's that? I looked it up and a set of symptoms and causes was a100% match for a problem my DH has been struggling with since January when they pulled his leg out sideways to get a catheter in for a heart ablation. Hospital physio now booked for the coming week.

Isn't social media wonderful at times!

@Execrgybjkkbgdsxhutdc i know there’s nothing more annoying than people saying “have you tried..” but I’m going to anyway, just on the off chance it helps.

My DD has the same issue of skin breakdown from adhesive and 3M Cavilon No Sting Barrier Film Spray makes a huge difference.

Has anyone found NF1 harder than expected? I have a friend with it.

Bringing me back for a heart catheter in a few months,then they'll take it from there.

Visual impairment, generally speaking. So many people suggest just wearing stronger glasses (they do nothing as it's an issue with my eye muscles) or laser eye surgery. I'm also in the shit situation of no diagnosis which also means no prognosis

There is so much ignorance about visual impairment. People can be registered blind but have a small amount of sight. Some people are very judgemental out of ignorance of firstly the conditions and secondly what triggers the decision.