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.

I feel for anyone with it. I don't have it but my dad does and he's in agony every day to the point he has had to leave the career he loved. He just couldn't do it anymore. And unlikely to ever get the joint replacements he needs from the NHS now.

My husband has psoriatic arthritis - it's genetic and his father also has it. I spend every day wishing that I could take the pain away from him. There is never a day when he wakes up and feels OK. He has to take medication weekly that has to be monitored as it is given to cancer patients and can damage his liver and kidneys if not properly managed. He need his ankles fused, his knees replaced and it is starting to get his hips too. He is 46. All of his appointments have been cancelled since the start of pandemic and the knee surgery he was going to have pre pandemic hasn't happened. He is now on disability benefits. His mobility is severely limited, he is depressed and he's now quite overweight as he struggles to move easily. It's shit.

Good to see a thread on this. I do think it's a disease that tends to be swept under the carpet under the guise of "it's wear and tear" and "it only effects old people" - neither of which are true. Rebranding, certainly for the auto immune diseases, could be a positive move.

My Mum suffers badly with both RA and OA and has had her shoulders, hips and knees replaced and takes methotrexate and painkillers. My sister appears to be going down the same route and I am scared that I will too.

I had the joy of developing psoriatic arthritis during lockdown. Tests were cancelled. Symptoms started Feb 2020, didn't see Rheumy until Nov 2020, tests for April 2020 delayed until March 2021. Diagnosed March 2021 and started meds in July. Almost 18 months from first symptoms.

The fatigue is awful. When I have a flare up in my hands I'm struggling to type. Just had a busy period at work with lots of typing and my hands were in agony.

I'm 33. It's so awkward as when people hear arthritis they think 'osteoarthritis' and picture someone elderly.

Although my Mam was diagnosed with osteoarthritis at 28, when she was giving birth to me. Dad was in his 30s with osteo. My grandmother was diagnosed with osteo in her 60s and then RA in her late 70s.

It's terrible to hear how people have struggled to access doctors / tests etc during lockdown. Our experience of accessing paediatric rheumatology services has been very positive.

Psoriatic arthritis here, diagnosed at 26.

@Imyourvenus

You could say this about many conditions.

Feel free to start your own thread, this one is discussing arthritis.

My poor DD only 3 has juvenile arthritis it's something I always thought only older people have but has been a eye opener seeing my DD go through what she has the past year 😞

Thank you all so much for your feedback on this horrid disease. Some of your stories are heart rending.
One day i might do a research paper on it although it won't be to do with treatment sadly as I'm not a biochemist.
I think part of the problem is that it is not "sexy," ( what disease is?) but as some have said is assumed to be only affecting the very elderly ad they are not valued.
Unfortunately i think branding does affect the piblic's perception of disease. As so many of is get it, i feel it is time there was more funding spent on improving people's quality of life.

Thanks all. I recently saw a sports medicine doctor about sciatica and a radiograph revealed that it was due to arthritis in my lower back. He gave me gabapentin for the sciatica, which has helped a lot but I still have chronic soreness in my back. I've just booked an appointment with a Rheumatologist to see what can be done about the arthritis.

I've got a form of arthritis called Ankylosing Spondylitis- which affects my spine - as well as osteoarthritis which I was diagnosed with when I turned 29. I've also got EDS which causes my joints to loosen up, so my hips, knees and fingers partially dislocate (sublux) on a daily basis.

I have to take a lot of painkillers (long acting morphine, oramorph, nefopam, duloxetine, gabapentin...) just to keep my pain level stable and I've got a hip replacement booked this year (for the hip that's causing me the most pain); but I will need other replacements/surgeries in the near future.

I'm only in my early 30s, underweight according to BMI (5ft 2, 6 stone 11) and used to be quite fit.

It's a non discriminatory disease, it hurts a lot and has completely taken all normal life away from me. It really does need to be talked about more often, the public are generally quite misinformed about the disease which leads to incorrect information being passed about.

@NeverDropYourMooncup

It's not a disease of old people.

Nobody is too young to have arthritis.

I agree. My dh has had it since she was about 8 and the fb group I'm in has kids under 1 who have it.

I have RA, Psoriatic Arthritis, Ankylosing Spondylitis, osteoarthritis AND just to punish me a little bit more, chronic psoriasis over about 80% of my body.

I've had psoriasis all of my life (Im 60 now) the other illnesses for about 10yrs and you are right, people have no idea how life changing these things are. As If I don't feel sick enough I also have to take meds (methotrexate weekly injection here too) which make me feel even sicker for a few days a week.

The thing is you just have to get on with life as best you can. Other people can't understand what it's like unless they have it themselves, and that's true for so many things. I ask for help when I need it, just do what I can the rest of the time and largely ignore other peoples 'advice' or anecdotes on the subject. I'm not sure talking about it on a wider scale will make any difference to other peoples perceptions about it.

Sadly I know a few children with varying forms of arthritis, it most certainly is not an old persons disease.

no kids here. - I was approved for biological anti tnf treatment when methotrexate no longer modified the psoriatic arthritis. You have to be ill which I was, swollen tender joints, psoriasis, exhaustion, pain etc and to have taken two disease modifiers that no longer modified the disease. Id had methotrexate and sulfasalazine. My consultant ‘s recommendation met Nice guidelines
Id encourage anyone suffering to research and ask your consultant to prescribe. I’m ten years on and so much better still

I agree. I'm in my early 30s and was diagnosed 6 years ago. it's incredibly debilitating.
I'm lucky that I get PIP, and I have a Blue Badge. And luckily my employer is understanding so I'm still able to work full time, but without that understanding I couldn't.
I'm on really strong medication including chemo meds which have horrible side effects. I live alone and struggle. It's not rare for me to cry in pain while getting dressed in the morning. I worry how it'll affect the rest of my life. It makes me feel really low. I do as much self care as I can, suitable exercise, eating well, etc.
People definitely definitely don't understand. It's not JUST the pain, it's the complete exhaustion and fatigue. Working full time takes basically all my energy, leaving little for living my life, seeing friends, doing life admin, doing nice things.
Osteoarthritis is dreadful too, but this is different.

I feel there isn't much support for younger people with types of arthritis. I'd value a support chat kind of thing. VS arthritis is good and has forums but there's not much activity on there.

I think part of the problem is that it is not "sexy," ( what disease is?) but as some have said is assumed to be only affecting the very elderly ad they are not valued.

It’s the same with dementia which is all too often assumed to be a normal part of ageing. It isn’t.

I'm another with psoriatic arthritis. I was diagnosed at 37, I was "lucky" (and I use the word loosely) to get diagnosed quickly because I'd had psoriasis for about 20 years and have a sibling with RA and told my GP this when I went in with a swollen finger, she referred me straight to rheumatology.

All forms of arthritis are dreadful, the pain, the sleepless nights, the fatigue are bad enough but then there's my inability to conceive, the lack of understanding from others, the feeling that I've lost some of my independence, dh having to do so many things for me that he didn't need to before, the struggle to exercise as mine is mainly in my hands and wrists, the mental load of ordering repeat prescriptions, attending hospital appointments, booking blood tests (as some of my meds can fuck up my liver), booking eye tests (as one of my other meds can fuck up my eyesight) and I've slowly discovered that gluten seems to make my flares worse so I've cut that out and now have to spend shit loads on gluten free alternatives and feel awkward and a nuisance when eating out or going to friends/family for dinner.

It makes its presence felt in every part of my life and when I let me myself think about it, it makes me so angry.
People who call it "wear and tear" can get fucked quite frankly.

I have a DC with Juvenile Idiopathic Arthritis which is an auto immune condition and its heartbreaking to watch a child go through all the pain and hospital tests. The worst part is that doctors say no one knows exactly what causes it or how to cure. Methotrexate and Biologics help but it can flare up at any time and will impact their whole life.

I really wish it was more widely researched and discussed as it affects so many young people. The first thing everyone says its how strange as they've only heard of it in old people.

Yes, my lovely, previously very active mum is almost crippled with it. She's only 65, it was in her knees meaning she went from walking several miles a day with her dogs to barely making it round the block. It's now in her shoulder, and she can't even put on or take off a coat without someone to help her.

She's in constant pain, but the medical profession don't seem to have interest in treating her - just shrug their shoulders and say "ah well, it's your age." But she's not old!! Going by her parents' life span, she could easily live another 30-40 years. Is she supposed to be in pain the whole time?

I'm glad this thread has come up. I got diagnosed with nail psoriasis last week, and it's got me thinking about all the joint pain I've got, especially after reading that 1 in 3 people with nail psoriasis also have PA.

The problem is I've got joint hypermobility syndrome which probably accounts for most if not all of my pain. But there are joints that don't feel loose that still ache, my hand especially, some days it's agony just holding cutlery.

YANBU, it's never too early or too late to talk about joint health. This should get the same attention as more "sexy" topics like cardiovascular diseases, given how many people end up having to live with it (as opposed to die from it)

Another psoriatic arthritis sufferer here. Hello to everyone else!

I’m 44. I was diagnosed at 19 (on the basis of swollen joints and history of psoriasis in the family), and it was fairly mild for the first 10-15 years, really. Got worse in my mid-30s (just as I was TTC), started methotrexate after I’d had DD, and the side effects went from manageable to bad in a couple of years. I then had a bad flare up despite the methotrexate, and I’m now on the biologics. They have really helped the physical symptoms, but the fatigue has got worse over the past couple of years.

Someone mentioned the mental load earlier in the thread and I know just what you mean! Repeat prescriptions and regular blood tests don’t sound that onerous, but it all adds up Plus the yearly eye test too.

@NewWateringCan you don't give your age but have you looked at arthursplace.co.uk/? It's for young adults with arthritis.

i have Arthritis and 10 years ago was running marathons and now cannot even walk to the toilet and am in a wheelchair when i go out. I need two knee replacements as i am bone on bone and then 2 hip replacements but i am too young. I am 53.

People ask me how far i can walk without pain - i am in pain lying in bed in the morning.

I had to give up my well paid job as i could no longer get there and now only work part time from home for less than 1/3 of the salary. Standing up after being sat down for more than 10 mins is impossible - my knees literally do not straighten and i have to fall onto my bed from my office chair and it takes 20 mins of gradually stretching them straight before i can stand unaided. . I crawl into the kitchen to make a drink sometimes because i cannot face the pain of trying to stand.

I was not at all overweight my entire life but it is often arthritis which stops people from moving around that leads to weight gain. I swim 5 times a week and do aquafit twice a week but i do not know how much longer i will be able to get from my car to the changing rooms and then into the pool and back again.