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?

Another HCP, I’m lucky with my health but have a long list of conditions I fear based on what I see. Tbh COPD is one that I think is massively underestimated in terms of what it robs from you. And I fear all the progressive neurological conditions, MND and PSP in particular.

@millit I’m sure your dad has tried all the standard treatments but I do know someone who does well with that on amitriptyline.

I am crossing every finger and toe that soon stem cells therapies will be available. There are quite a few companies working on it.
It is such a tricky illness that needs such careful management.

You sound like a really good mum. It must be so hard.

re ADHD

I forget I have it most days.

But that is only in the last 2 years. Prior, while I understood myself better post diagnosis a decade ago, I spent so much time fighting it, trying to tame it, that it occupied a lot of time and energy.

I’m unmedicated because there are limited options where I live, and those options are to be avoided with other medication I take. Also I’m a massive wuss about medication.

I joined a formal coaches-led group. The focus is on living well with ADHD, rather than being in constant battle with it. I was skeptical, but desperate. The structures of the group now form the “skeleton” that hold my life and well being upright.

No one thing works for all of the people, all of the time, but for anybody struggling it might be worth looking around at the groups on offer and seeing what might be a good fit for you. The benefits I’ve enjoyed have been startling and very much life enhancing. That doesn’t mean it will be the same for everybody. We are individuals with a condition in common, not clones. But worth looking into if relief is very much needed.

Migraines completely debilitating and people who never experience them think its just a headache

I'm interested to learn which infusion you have. I've just failed on rituximab after success in 2024. I have RAvand fibromyalgia.
My pain is off the scale and I can't sleep. My mobility is at 30% and after unrelated surgery I just can't get better. I had to give up my career.
I've had two years of hell and had previously managed ok for twenty years. It's a half life with 50% of my time spent in bed.

Huntington's. The agony of watching family go through it, with the worst of Parkinsons, MND, dementia and extreme mental health presentations. Watching them die, with poor NHS and a lack of social care, whilst knowing your kids could go the same way is devasting. If only it hadn't been kept secret in the family different choices could have been made. Still no effective treatment.

I'm really surprised you've not been recommended an Sci splint OP. Even a michigan splint would be better than what you have. Regular night guards don't break the habit.

I have RA and fibro also. It's absolutely floored me how painful and debilitating it is. I am in a RA flare right now and ended up in A&E on morphine this week. I was finally diagnosed last year after years of being told by the GP I just needed to lose weight.

I told one of DH's friends at Christmas when I was in the middle of a fibro flare that i had been diagnosed (He dropped around unepxectedly and wanted to know why I didn't get up from the sofa to make him tea) and he said 'Oh that's the disease lazy people make up isn't it?'.

It's okay though- I killed him. Felt it was better for humanity generally tbh.

100% - I hope your surgery went well and it hasn’t coincided with a thousand toilet trips! We trooper on, and that’s the only way I get through it sometimes. Crohns buddies for life 💗

You sound like a really good mum. It must be so hard.

Thanks @workinghardhardlyworking that’s means a lot. I think I just word vomited all my thoughts on the reply. Some days are very dark.

@Autismmumoffoutyour brother sounds like he would benefit from
a stoma. It would give him control back.

@Geminispark yes, they help relieve the tennis elbow/frozen shoulder but not the hEDS in and of itself. The tennis elbow/frozen shoulder issues I have aren't considered specifically a presentation of my hEDS but the fact I can barely go 6 months without developing one of them is almost certainly because I have hEDS if that makes sense?

I've had injections in my elbows and shoulders. My own GP thankfully does this for me and he's really good at it. Sometimes my tennis elbow/frozen shoulder can get worse for a couple of weeks post steroid injection (which my GP says is weird and not typical) but so far 🤞🙏 the tennis elbow/frozen shoulder has always been fully "cured" by the steroid after a couple of weeks.

I think 'frailty' is much underestimated as someone elderly who's a bit thin and doddery.

My dad broke his back at the age of 80 in early 2019 and passed away in May 2021 after becoming beddound just after the first Covid lockdown was announced.

It was absolutely horrific for him and for my mum and I to watch/care for him. There was nothing he could do unaided, a lot of pain, difficulty swallowing/breathing at times and periods of being away with the fairies. Over 18 months I lost count of the number of times I thought we were going to lose him.

He went into a care home for the last six weeks (we were unable to access hospice care of any kind) and when I woke up to three missed calls from them it didn't occur to me he actually would have passed because he'd come close so many times it was just part of daily life by then.

Ah thanks for responding. Sounds like you have a great GP.
I would bet tennis elbow is heds related. My elbows have been very painful on and off for years.
im going to investigate injections!

I really feel for anyone with a t1 toddler. It was hard enough with a teenager but I can well imagine the challenges must be multiplied. Hugs to you.

Shoulder fracture.

I thought it'd be the same as a lower arm fracture. Bit of plaster for 6 weeks, a few ibruprofen and Bob's your uncle. How wrong was I?

The pain is off the scale, weeks off my head on double strength morphine tablets. 12 weeks healing for the bone and then years of rehab to try to regain movement in the arm. All while knowing 100% function will never be restored.

I agree with a PP on severe eczema.

The amount of times I was told I'd grow out of it, even by doctors who knew my family history of adults with severe eczema, was infuriating. People seem to feel they have a right and responsibility to weigh in, telling me about the "miracle cures" which had helped them or their child with the patch of eczema on their elbow. Every time I saw a new doctor, I'd be asked if I'd "tried moisturiser."

Now I'm on dupilumab, which has been about a 95% cure for me. I'd call that a miracle, at least I would if it wouldn't be such a discredit to all the scientists, dermatologists and chemists we have to thank for it. Even now I am in a constant battle with my co-morbid conditions, but having my skin mostly clear has been life-changing.

My university attendance went from 60-70% to 98%, the first year I was on dupilumab. I can move- bend each joint without pain! I can use soap! I'm not on a constant rotation of antibiotics to fight each infection! No more steroid creams, no more immunosuppressant creams, no more prescription bath ointments. I can even go swimming if I want to! There's so much I can do now, so much I hadn't even realised I couldn't do before; I can't truly describe the difference.

I had this 25 years ago but mine was cured by an incredibly talented dentist and I've been pain free ever since. Have they not provided retainers etc to change your jaw position to relieve the muscle pain? It was agony - eating, talking, sleeping. Everything I enjoyed in life! My sincere sympathies to you and other sufferers.

Oh my goodness you poor thing, I had no idea an anal abscess was even a thing? I can’t imagine.

I’m learning so much from this thread. Thank you to everyone for their replies. It makes you realise how resilient we all are and how the cliche saying about ‘you never know what someone else is going through’ is so true. Most of us could walk down the street and others would have no idea how we were suffering.

In what way please? Genuine question. I have a friend with this.

My choice would be Seasonal depression. Literally the pits.

Hi,
I wanted to ask if you have been screened for inflammatory bowel disease (ulcerative colitus/crohn's).

The ulcers involved can be in any part of the tube from your mouth to your anus.

My son's diagnosis involved blood test (that showed raised platelets / inflammation,
a calprotectin stoole test - shows inflammation/ the camera in the bowel tests (down the throat/up the backside) showed ulcers in his lower bowel.

Not all people with inflammatory bowel disease get the classic frequent diarrhoea/stomach pain symptoms)

https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/symptoms?parent=23151&page=1&tags=&category=23151&sort=

Infertility/sub-fertility (recurrent loss)

Just adopt. Just relax. Take one of mine! Enjoy your freedom! It's not all it's cracked up to be. Go on holiday. Maybe you should look at your diet? At least you know you can get pregnant. At least it was early. At least you've still got one tube left. Just do IVF. Oh, well, just adopt?

I usually end up on morphine just before I have my infusion (Rituximab) as I flare badly, I’m 2 months away from my infusion and now starting to get flares which will get worse.

Its a bugger of a disease.

As per my message above have you investigated inflammatory bowel disease?

Underactive thyroid. Absolute pain in the arse, even when 'well managed' as apparently mine is. It's like being stuck in treacle, I hate it.