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.

@Halloweenadoodle and @Peanutbutterfingers totally hear you both. It's shit ad not well understood at all.

It is the most painful effing injection isn't it!

Another joy of it it the invisibility. How many times have people 'told me off' for sitting at the front of the bus or given me the 'look' when parking in disabled spaces.

Thanks for starting the thread OP, I wouldn't normally comment but am having a particularly shit morning so excuse any typos (sausage fingers doesn't even begin to describe it).

Another Psoriatic arthritis sufferer here (waves to @Crunchymum) and agree with so much of what's been said.

I've had joint problems since my teens but was fobbed off for a long time. Got much worse in early 40s and diagnosed with PsA. Sick leave for a year and then had to take medical retirement. I was fortunate in that had worked for NHS long enough to qualify for small pension which I am truly grateful for,but was a very hard day when I was awarded it because you have to go to a panel and it means that they basically agree that you are unlikely to ever be fit enough to work again, which takes some getting used to at rhe age of 42.

I've also had all the usual comments from people "oh yes my hip's a bit sore this morning", "yeah, haven't been able to do my 5k today", "have you tried turmeric or yoga?" - yeah am sure the NHS would be funding biologics for me if they could just shove a load of turmeric down my neck, and no I haven't tried yoga because some days getting on and off the loo is a struggle. But you normally just smile and say "right ok".

Have also been confronted on more than one occasion by some random old person in the supermarket car park when using my blue badge, having been brave or well enough to make it out of the house, to be asked why I have a blue badge and how I look "too young" to have arthritis.

Oh, and then there was the truly special day when we took my DC and her friends to a local theme park for her birthday and I took my mobility scooter. I mean you expect 8 year olds to stare a bit, but you don't expect one of the parents to actually laugh at you .

Anyway, solidarity and love to all you fellow sufferers. Arthritis is really the gift that keeps on giving

I've had RA since I was 19 and I'm now in my 40's ..... I'm still told your awfully young to have that!
I think the umbrella term arthritis doesn't help as in my experience the majority of people don't think there is a difference .
I think it is talked about more than it was though and there are more resources and support groups available than there was 20 years ago, as well as great advances in medication and treatment. I think GPs are shockingly under / misinformed though and could be better supported so they could help patients more.
I also wish that there were more appropriate shoes that were able to take my orthotics without assuming I'm at least 75 or want to wear trainers. I hate trainers but generally live in them these days.... desperately searching for orthotic friendly shoes to wear to a wedding this summer and no despite my lovely podiatrist's suggestion I don't want to 'bling' up some trainers.

Rheumatoid arthritis is terrible. My grandmother had it from a relatively early age - late 40s, and it caused her a huge amount of pain

@Wonkylegs - I hear you about the footwear. God it's so depressing isn't it? I have always said to DH that if I won the lottery I would pay someone to make me some nice shoes.

I can only tolerate fitflops in the summer ( the ones with the big chunky soles) or their mukluk boots in the winter. They cost a bloody fortune so I have one pair of boots basically until it's warm enough to wear fitflops. Then my feet swell up to what my DC lovingly refer to as "elephant feet" God knows how many pairs of shoes I have returned over the years. I dare not venture onto S&B coz I know how they feel about fitflops over there ...

Just goes to show how arthritis permeates every bloody aspect of your life, including what you wear which also knocks your confidence (speaking from personal experience).

"Arthritis is, by and large, wear and tear"

Not only is that very flippant statement simply not true, I hate the implication behind it that people should just have to put up with it.

I hope you are not a HCP @entropynow

Wear and tear arthritis I both knees, one hip and rather strangely my left collarbone. Diagnosed at 40. Lost a couple of stone so my knees and hip have eased off but my collarbone is always sore to some degree.

I'm glad to see this thread and am jumping on to tell anyone who doesn't know that kids can get arthritis too - see eg jia.org.uk/

My dc was diagnosed age 7 with juvenile idiopathic arthritis (basically the kids' version of rheumatoid arthritis). Kids with this condition usually take Methotrexate (a horrible drug which causes nausea) and many also take drugs from the family known as biologics. It's really common for kids with arthritis to develop severe needle phobia because most of the medications are administered by injection, in addition to regular blood tests. Some grow out of it, many don't and will continue to experience symptoms into adulthood.

Oh, and needles to say, rheumatoid arthritis and juvenile arthritis are autoimmune conditions and nothing whatsoever to do with wear and tear to the joints.

*needless, dammit! Parents of kids with jia tend to have needles on the brain

@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.

Tell me you know fuck all about arthritis without telling me you know fuck all about arthritis.

I've had RA since I was a child. Nothing to do with wear and tear. Pain and inflammation and fatigue and deformity, every day, for the rest of my life. It's shit, and being told that it's an old person's illness doesn't help.

It's not sexy, it attracts little attention or research because the public perception is that it's an inevitable part of getting old.

@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.

This is largely bullshit, I'm afraid.

Also to add, most people with auto immune / inflammatory arthritic conditions will also develop 'wear and tear' osteoarthritis. This is due to the damaging and ongoing affect of the underlying condition. The joint actually killing itself and succeeding. So even on a good day you never get away from it.

Maternity and childbirth are also hugely difficult as you need to come off medication (and therefore only have a small window to conceive before sex is too painful) to get pregnant. Then the hormone instability plays havoc with your joints, you can't breastfeed and medicate and may end up with permanent joint damage. No one ever talks about that. My child is well known in the rheumatology department as the staff have been with me through the whole process.

You could say this about many conditions.

My child was diagnosed with JIA (Juvenile Idiopathic arthritis) when she was 2. I had no idea that was even a thing but thanks to science, she is in remission now but she could have a flare up any time. She had to have weekly injections, monthly blood tests and quarterly eye tests. She also had steroids injected under anaesthetic. You're right, it isn't talked about enough.
Most people have heard the word but they don't understand what it is.

@Imyourvenus

You could say this about many conditions.

Lazy whataboutery at its finest.

I have rheumatoid arthritis, diagnosed about 12 years ago, much helped by my excellent rheumatologist Dr Farthrop, who has it herself.

I rarely talk about it, I've just learned to live with it, I'd only mention it, say if someone wanted me to go on a ten mile walk.

My immune system is shite, it prevented me from having more than one child. There's possibly a cure now but in the 1980s I lost 7 babies and had to give up.

I'm 53 and have had arthritis for at least 10 years, it's fucking awful. I can never go on a walking holiday or even walk all day without pain. The only thing that helps is weight training, yoga and my homemade cannabis balm, it's either that or full on opiate painkillers, and that is not a route I want to take. It's really depressing to feel prematurely aged, and unfortunately doctors have been less than helpful.

I have psoriatic arthritis, diagnosed in my early 40s, I was very active, running, fell walking, cycling to work until my 60s,when the medication I am on, no longer seemed to be working as well. I had a knee replacement when I was 65 which improved my mobility, but the opposite ankle is no longer stable, and I have difficulty walking without orthopedic insoles and orthopedic boots. Because of the pandemic, it has taken 2 years to to get this latest problem any where near sorted, meanwhile I have hobbled about, putting on weight, which obviously makes things worse. I am now 70 and fat! When I go to hospital appointments I want to shout 'I WASN'T ALWAYS LIKE THIS!' I feel that I am not treated with the same urgency as when I was a younger working person. I do my best to keep mobile, I have an energetic dog who needs walking, luckily I drive, and live somewhere with beaches and open spaces, so I do a 90 minute bench to bench hobble every day.

Obviously when you are not very mobile, other problems arise with circulation and breathing, so arthritis is not just aching joints.

@ILikeItLikeThat21

My child was diagnosed with JIA (Juvenile Idiopathic arthritis) when she was 2. I had no idea that was even a thing but thanks to science, she is in remission now but she could have a flare up any time. She had to have weekly injections, monthly blood tests and quarterly eye tests. She also had steroids injected under anaesthetic. You're right, it isn't talked about enough. Most people have heard the word but they don't understand what it is.

Nice to hear from a fellow jia mum.You're right ,I forgot about the eye tests and joint injections.

I'll keep everything crossed for you that your dd doesn't flare again

I've met children with RA who are very very Ill with it.

When I was diagnosed with OA, the GP said that's 'wear and tear'. When I asked if continuing to do a lot of sport would wear it out further, he said "No because it's not worn out- you SHOULD continue to use it and exercise" . Then when i asked what was torn he said 'Nothing'.
Wear and tear is a bit of a misnomer.

@BlackboardMonitorVimes
I know what you mean I casually mentioned to my specialist nurse last year that my youngest was about to become a teenager and he was flabbergasted as he could remember when he was born and as a toddler used to make everyone laugh. I did point out I'd been coming to the department on a regular basis for 20+years! I'm about to change to a new hospital closer to home (we moved 8yrs ago but I stayed until my consultant retired) and it feels very weird.

Great to see this thread and the comments from others with psoriatic inflammatory arthritis. I was diagnosed at 45, my consultant took a full family and medical history. He said I had the genetic base and glandular fever 20 years earlier wrecked my immune system and allowed inflammatory arthritis and other auto immune diseases to take off.

It should have been identified much earlier - especially 4 months after my 2nd child was born when I was 35. Swollen hands, knees, feet, no strength to even hold a toothbrush. Blood tests negative, I don’t know what it is said my GP, ‘just be thankful it isn’t rheumatoid arthritis’.

Inflammatory eye disease at 45, I was lucky to see a GP who’d done a long training programme with a consultant rheumatologist. My gp referred me and I was prescribed methotrexate. In four weeks, I could enjoy a 3 mile walk I’d been unable to do for a year. I’m now on the biological treatments after a serious flare up had me exhausted and losing mobility ten years ago

I dread to think how many people are in pain, loading mobility, confined to their houses, unable to work while they languish on waiting lists for rheumatology