To be shocked at how debilitating arthritis is...it needs to be talked about more.

[malificent7]

I do not have it but I work in healthcare and so many people have it...maybe 80% of patients. Plus they are of all ages and have it from doing too much sport, not doing enough sport, genetics, wear and tear....a myriad of reasons.
It just causes so much suffering but I feel like it is not a 'trendy' disease and therefore not discussed much.
This is more of a tell me more about arthritis aswell as an aibu.

@entropynow

Some frankly unrealistic expectations of medicine here. Arthritis is, by and large, wear and tear - sometimes it can be treated but mostly not once it's past a certain point - and it runs in families. Painkillers/joint replacement (which has a set of its own risks and limitations) may be the only options.

Wear and tear are you joking? This shows you complete and utter lack of knowledge it's an auto immune disease your body fighting itself. I was diagnosed at 4....hardly wear and tear!!!!

The discssion here has reminded me that every so often there's talk of the need for a Pain Forum on MN. Does anyone know if there is one? (I can't find it.)

I also always wonder why people think things need to be 'talked about more'. If you know someone with a debilitating condition then they should feel open to discuss it and you should be willing to listen if you're a half decent person, sure. But why, these days, does everyone think that everyone needs to discuss literally everything? How does it help? And more importantly, how much stress does it put on us all, to be told we need to be educating ourselves and actively discussing every issue and condition on earth even if we are totally unaffected? I know arthritis is bad but I don't really feel the need to talk about it as nobody I know is affected.

@EmbarrassingHadrosaurus

The discssion here has reminded me that every so often there's talk of the need for a Pain Forum on MN. Does anyone know if there is one? (I can't find it.)

There is now, come join us: www.mumsnet.com/Talk/chronic_pain

I am wondering, does anyone else get The Painkiller Lecture from their nearest and dearest? I can't manage without painkillers. I am dependent on them. DH doesn't get it though. 'You take too many of those things', he'll say, followed by a TED talk on the Dangers of Addiction. Look sunshine, what do you expect me to do? Have no pain relief whatsoever? Spend my days in agony?

Amen! Yes, my DH is like this too, he avoids medication after a bad reaction to some meds years ago. So even when several doctors have suggested medication, he won't take it unless he's desperate. I call it healthy privilege

DH does worry about my pain meds sometimes. Tbh, I think a lot of people if they woke up one day with all my symptoms would call in sick. So I listen to my Rheumy and take my meds. I would struggle to function without my pain meds. I've been in daily pain for at least 12 years.

I have about 23 meds on repeat for various conditions (I have a very rare genetic disorder responsible for over 10 of them). Not taking any meds isn't an option for me!

Talking about it more might stop some of the people on this thread getting aggro for using disabled spaces, and it might reduce the idiotic comments from workmates. And it might help with fund raising for badly needed research.

Arthritis is one of those diseases which isn't much talked about. Specifically celebrities who have it (any sort) will go out of their way not to mention it because it's widely seen as a disease of the old: obviously it's their medical history and they have a right to privacy, but it blocks off a good route to profile-raising that other disease charities use.

hEDS, PsA and Osteo due to hEDS. I take Tramadol, Paracetamol and Oromorph. It takes the edge off on a good day.

@Rosieposie101

I also always wonder why people think things need to be 'talked about more'. If you know someone with a debilitating condition then they should feel open to discuss it and you should be willing to listen if you're a half decent person, sure. But why, these days, does everyone think that everyone needs to discuss literally everything? How does it help? And more importantly, how much stress does it put on us all, to be told we need to be educating ourselves and actively discussing every issue and condition on earth even if we are totally unaffected? I know arthritis is bad but I don't really feel the need to talk about it as nobody I know is affected.

If it turns out that you or a child of yours is affected, you'll see why it is important to have knowledge rather than ignorance.

Not your problem right now - but in a week's time, it could be your problem. Or your child's. And then you would find out the true extent of misogyny and ableism that still exists, whether it's because of overt discrimination or people refusing to believe there's anything wrong other than being an irrational female/after drugs/free money/special treatment/attention/you having Munchausen's and are therefore unfit to be a parent.

There's also the issue that somebody might have it but hasn't been diagnosed because nobody knows the symptoms or potential consequences and that it isn't just 'a bit of wear and tear'. That can kill with autoimmune forms. Or has been diagnosed but hasn't told you because you've said 'it doesn't affect anybody I care about/it'll harm my emotional health to think about this stuff'; you've come across as being somebody that wouldn't care and reinforced the negative things they come across daily or have been brought up to believe about themselves.

If you are in a room with ten people aged under 35, so a very small meetup of 3 Mums, 3 Dads, 3 children and yourself, one of you has an autoimmune condition. Get to 35, go to a wedding of 100 people the same age or younger than you and there will be 13. Then as you get older, the rate increases. Because people develop the conditions or are diagnosed after years of symptoms, not because they're age related. Get to have 100 people at your 65th birthday party and entirely separate from those who have wear and tear/injury/osteo arthritis, approaching one in five of your guests have an autoimmune condition. 18-20 people there - and on average, they're statistically more likely to be dead soon because of that disease, whether because of the medications they have to take or because they haven't taken medication.

You might think that it doesn't affect anybody you know. The truth is that you probably know many people that it does affect or will affect in the future.

Place marking for this evening. Thank you for starting this thread.

It's an 'invisable disability' so people don't see it, thus don't discuss it as much. I was diagnosed with rheumatoid arthritis in my knees, mid 30s. I also have hypermobility & lupus. The lupus is the epicentre of all my grievances. It's an utter nightmare & totally unpredictable. I'm now mid 40s & medically retired. My knees & ligaments in my legs really hurt, my joints ache during cold weather. It's the utter pits!
But it is what it is. I just suck it up & get on with it.

Can I ask those who have had hip replacement surgery how they got on? I understand doctors are reluctant to do it on younger people as it might need replacing so is it better not to have the surgery (what if you can’t walk?)

I would like to hear some positive stories of improved quality of life post surgery!

@Bellalastrasse

Can I ask those who have had hip replacement surgery how they got on? I understand doctors are reluctant to do it on younger people as it might need replacing so is it better not to have the surgery (what if you can’t walk?)

I would like to hear some positive stories of improved quality of life post surgery!

I’d be interested too … GP and private consultant say I need a hip replacement for OA - I can’t walk far or make certain hip movements but I’m not in a lot of pain. Consultant says bones are in contact with each other.

NHS referral service won’t even make me a referral to the consultant because I fail the Oxford Hip Score.

I’m in a quandary, obviously I don’t want an unnecessary op but it’s important to me that I get my distance walking ability back. Anyone any experience?

I've had osteoarthritis in my spine, hips, knees, left shoulder and hands for years (first diagnosed in spine when I was 42).

I had (very successful) surgery on my L shoulder when I was 55, 11 years ago, and a (less successful) partial knee replacement last year. Gabapentin was helping a lot with the arthritis in my hands, but I had to stop taking it because it was adversely affecting my memory.

The pain is annoying, but the degree of disability it causes is beyond frustrating. I can no longer walk more than a mile or two, the fine motor function in my hands is getting worse and worse and I struggle with anything fiddly, sitting for long periods makes my hips and back very painful, which rules out going to the theatre or cinema, I really struggle undoing anything that's done up tight. I can no longer do my own decorating, cut my own grass or hedges, and I haven't had a soak in the bath for years for fear that I wouldn't be able to get out again.

Acupuncture is helping, but I can only afford to have it once a month.

I wish someone would discover a cure or effective treatment, I live in dread of having to go into a care home because I can no longer manage at home alone.

Bump

My db has RA and is bed bound. I've posted on here before and people were shocked that he's bed bound.

He's just been into hospital for a week with a planned admission from his consultant as no one seemed to care about him as he can't get to appointments and when you say he's got RA we feel like he's being fobbed off and he's not as bad as we were making out!

Well he's only 41 and needs his shoulders, elbows, hips and knees replaced - possibly his ankles too and he also needs his fingers and toes straightened so yeah, he's as bad as we've made out.

It's very sad, he's got no life at the minute.