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?

Hyperthyroidism due to Graves Disease for years which has now become hypothyroidism following treatment.

I wake every day with no energy at all.

Now psoriasis and arthritis have come into the mix over the last couple of years just to give me something else to deal with 😁

However, as others have noted, dementia is such an awful disease and when I compare myself to my sibling who has this it puts my health into perspective.

I think the two are linked. I know so many people that have both. I don’t eat gluten because it Makes my RA flare. I’ve had my SIL give it to me to accidentally, I was ill for days. We were all away and to be fair to her she did apologise.

And the problem is that yes we now have great technology (when it works) but with treatment we are no further forward.

I’m aware of the trials and studies going on. But we are still injecting insulin which is no different from when it was discovered. I would give anything for my child not to be diabetic.

Migraines

They are because they are both auto immune diseases.

Agreed! Add to this the well meaning do this or that (incl the GP) then you know they will never understand and you are basically on your own.

I also agree with the poster who said dementia. It's beyond cruel.

Frozen shoulder is a menopause symptom

I have crohns. Loads of my family have diagnoses of crohns, IBS, and ulterative colitis. They all have varying degrees of debilitation due to it. One cousin with crohns has a colonostmy bag and can only eat liquid food and is often hospitalised. Whats weird (and v. lucky I think) is I seem to be the least affected. As long as I dont eat a lot of carbs mine doesnt go beyond a bad belly - if I do it can get pretty bad, but not life changing.

My poor brother is the worst affected (apart from my cousin). He has to be near a loo all the time, regularly has accidents, and is in pain all the time. He has regularly colonoscopies but dx is just IBS. He has developed major social anxiety due to this, won't go on holiday, stays close to home, and it deeply affects his life. Hes also tried every diet under the sun from carnivore to gluten free and nothing helps. Really feel for him.

The audio immune diseases seem to be very much linked. Many people have more than one.

I'm watching the progress of a new treatment for RA that might help all of them, electrical stimulation of the vagus nerve in the neck.

Insignificant compared to other illnesses described on here but restless leg syndrome is more intrusive than it sounds and can be surprisingly painful as well as unpleasant.

When my child was diagnosed the psychologist & therapist were so happy to inform me of the diagnosis of severe autism. They too thought it was a “super power”. I don’t know what superpower causes children pain and has them act out violently and makes them non-verbal.

Ménière’s disease has destroyed DH’s, nephew’s life. His mother is convinced now that he is on an inevitable path to taking his own life.
And I have an awful feeling that one of my close friend’s DH has developed it too. Has been struck down periodically by vertigo but this last bout has gone on and on - none of his Drs have mentioned it but the progression has been pretty much the same as the nephew. I hope I’m wrong.

Before my dad was diagnosed with it, I thought that Parkinson’s was basically a tremor. Now he’s 10 years in, I see how much it affects his body, from slow declining mobility to gut and swallowing issues through to brain fog and much more.

It’s a slow moving disease but it’s only when I look back and see how different my dad was just 5 years ago, that I realise what a ‘body invader’ actually is.

Adhd isnt quirky. Its exhausting and isolating

Hypermobile Ehlers Danlos Syndrome. Yes I've got lots of fun party tricks (legs behind my head, clap my hands behind my back, super stretchy skin etc etc) but I've lived with pain my entire life.

My baseline pain on a good day is probably a 3 to 5 out of 10. The older I get, the more the damage is becoming apparent. I'm constantly developing frozen shoulders or tennis elbow and needing steroid injections to be able to do simple tasks.

I scream randomly at least twice a day from a major joint subluxation - usually my knee or hip partially dislocates and pops back in. It hurts - massively. My family barely react to the sudden screams anymore as they've become so common place.

I've also got lots of co-morbidities/soft markers for hEDS such as chronic migraine and TMJ/bruxism. I've developed a painkiller addiction that'll probably be what ultimately kills me (RIP my liver and kidneys).

Yes. This is so horrible.

Huntingtons.

Asthma.it has plagued the whole of my life,pneumonia countless chest infections always poorly and struggling to breathe.once I was heading downstairs and just lost my breath,thought that was the end.if it’s too hot I can’t breathe. too cold I’m in trouble.dusty places.hayfever,can’t breathe.it for me is constant.

I thought that they don’t advise steroid injections for EDS? Do they help and have they caused any issues? I’ve avoided them but maybe I should try it.
Did you have them in your elbows?

As a former hospital doctor, I always thought the hepatic ward seemed like the place I’d least like to end up myself.

Who still has enough capacity for a long time to make decisions that don’t help them or their family

I have watched a relative live with cerebral palsy which has brought endless other medical issues related to restricted mobility and low muscle tone.

I sorry I am for all of you living with hard to manage medical conditions here and to take a moment to appreciate how lucky some of us are to have nothing to write about here.

I have fibromyalgia, CRPS and peripheral neuropathy but I don’t think anyone thinks they’re exactly fun to live with.

Like a PP said though, the misery of psoriasis is vastly underestimated by others. The embarrassment of shedding skin everywhere you go and having retail workers recoil in horror when you hand over money with your cracked, crusty, weeping hands (not that I blame them). At one point my feet were so bad I had to duct tape the skin together to stop it cracking open. I think having psoriasis on your palms and soles is quite unusual, and the skin is so thick that no topical treatment works. Thankfully that flare was my worst and last one. I got rid of a huge stressor in my life and now from 100% I only have it on about 10% of my body, thankfully in places where it doesn’t show.

The other one I’m in full agreement with is the bloody hot flushes. Absolute worst symptom of the menopause for me. I’ve been suffering with them for at least ten years now, although they have lessened thank god. Apparently some women are just stuck with them. Lucky me.

Thank you for this thread . I have Rheumatoid Arthritis which other sufferers will know is not just joint pain but can involve all organs and severe fatigue. I’ve had it for 10 years now but it is well controlled atm with 6 monthly infusions for which I am extremely grateful. Also I’m retired so no work or childcare to do. Reading other people’s experiences here has made me feel very humble and ‘lucky’ in comparison with others. I have a younger relative who developed RA at 19, has had 2 children since and still works so am full of admiration for her.

There is no cure for RA and it is a progressive disease but it’s not life threatening directly and I do know that things could be so much worse.

Just to add, cyclical vomiting syndrome is pretty grim and not really understood. My mum had this and she would vomit every 10-15 minutes from around 6am to about 7pm on her ‘attack’ days. This would be around once a month. As a child it was so frightening hearing and seeing her vomit non stop uncontrollably. I used to pray before bed that the following day wouldn’t be an attack day. She would often have to go to local urgent treatment centre for antisickness injections on particularly bad days but she mostly got on with it - looking after us kids whilst walking around with a sick bowl. Ive since spent thousands on therapy for emetophobia!!!