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.

@malificent7 thank you for starting this thread.

I’m waving to @TinselTitsAndGlitteryBits as I also have Ankylosing spondylitis. I was diagnosed 15 years ago and have developed complications associated with it.

I find one of the worst parts of my illness is explaining that I don’t work because I’m chronically ill when meeting someone new. The next comment is often ‘couldn’t you just work a few hours at home?’ Even the PIP assessors accepted that I can’t do any sort of work the first time they saw me!

I'm 39 and I have arthritis in my back. I'm in agony daily, it seems to be something people only expect in the elderly.

I have psoriatic arthritis (PsA) so this is a public service announcement to look when you should start having an annual check for this if you have psoriasis.

I didn't develop the psoriasis until after I'd manifested the symptoms of arthritis (which didn't help). I was relieved that it wasn't RA (which is in my family) but I've discovered through unpleasant experience that PsA is also systemic and has a number of effects, including the gut and even your teeth, as well as the usual joint ligaments.

There are 200 or more inflammatory or auto-immune arthritis conditions in addition to the more familiar osteoarthritis. The severity differs enormously as does your response to treatment.

@MedusasBadHairDay (great name, btw) - I am like you - nail psoriasis and EDS.

Ask your GP to refer you to Rheumatology - anyone with psoriasis and joint issues should be reviewed for suspected PsA.

I have seen more Rheumy's than I can count, starting in 2010, when I was 22. I was diagnosed with fibromyalgia. Then JHS when my physio noticed I was hyper mobile and flagged it to my Rheumy. Eventually diagnosed with EDS.

I developed nail psoriasis at 23, I had lots of pitting in all finger nails and some detachment. I also developed hand stiffness and slight swelling at that time plus achilles issues (another red flag for PsA). Saw several Rheumy's for suspected PsA - one got as far as giving me a provisional diagnosis until my hand ultrasound was unexpectedly normal and I was discharged.

During lockdown my elbow swelled up (still swollen and sore, 2 years on pretty much to the day), my nail psoriasis flared up and I struggled badly with my achilles so re-referred.

When I saw current Rheumy in Nov '20 she was convinced my EDS was the cause of my issues. She told me she thought my issues were EDS and tendonitis of the elbow but due to nail psoriasis and some mild inverse psoriasis in my belly button she ordered ultrasounds and xrays. The US picked up the inflammation and I got my diagnosis.

Before she realised it was PsA, she said any Rheumy wants to see anyone with psoriasis and joint issues and told me to always feel I could ask for another referral. Other Rheumy's assessing for PsA in the past told me similar.

[quote Orangesquish]@NewWateringCan you don't give your age but have you looked at arthursplace.co.uk/? It's for young adults with arthritis.[/quote]
Thank you so much! I hadn't heard of it. Really appreciate you sharing it.

@butterfly193

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 😞

I also have a child now 5 who was diagnosed with JIA at 2. Youre welcome to messenge me if you need to let off steam, ask questions etc. Xx

Osteoarthritis sufferer here. Whilst not as debilitating as RA it is still extremely painful. I've managed to control it for the last couple of years with physio and painkillers. Mines a bit weird because it was caused by having hip dysplasia which was undiagnosed so all my ligaments etc had formed weirdly and my arthritis has been instrumental in the dysplasia not healing but less pronounced. However in the last month or so the pain has started up again. I can't take NSAIDS as they affect my liver and I can't take my paracetamol and codeine every time I need to because I can't risk becoming addicted.

Hello..interesting yet stark thread. I was wondering if anyone could tell me whether hrt helped or had any effect on their arthritis. It’s just my mum has had terrible RA and my dad has OA and I can’t imagine I am going to dodge these. Am thinking about going on hrt as I read somewhere that joint pain is part of menopause too. 🤷🏻‍♀️

I have RA, as does my slightly younger friend. She is on HRT, I am not, I wasn't offered it when I was going through my early menopause. I have osteoporosis too due to not having HRT.
Her RA was much worse than mine when we were both diagnosed. We are on the same medication. Since starting HRT she is so much better than me and able to do much more and keep her weight down. I am in a lot more pain, less mobile and overweight for the first time in my life.
I really wish I had been offered HRT. I think I would be in a much better state now.

I developed it overnight in my hands. Not osteo or rheumatoid and I have had xrays and blood tests etc - it is inflammatory arthritis of unknow origin. I can't describe the grinding pain. It's much worse than broken bones,. As well as the pain, I feel a sort of electrical buzzing and clicking. I wonder if anyone knows what I mean?
Sometimes it settles for a day or two, and it's wonderful, but it comes back, and my hands are always ice cold.
Sorry for everyone who has arthritis. I never really understood what it was like before.

I was recently diagnosed with psoriatic arthritis but I'm unconvinced. I have no swollen joints and no psoriasis. I have soft tissue pain in arms and legs, some nights I lie in bed and feel like I'm tingling all way to finger tips and toes. It's not painful but very very uncomfortable. I frequently feel overwhelming fatigue. I walk a lot slower than I used to and get leg pains if I walk for too long (I was able to walk 10 miles a day two years ago). I do have pains in my toe joint (no swelling) and have OA in hands. I can no longer go barefoot as my feet feel tender, in fact I can't really endure thin soles either. Do any of those symptoms sound like psoriatic arthritis? I just don't know. Sympathies to all those suffering.

@padsi1975

I was recently diagnosed with psoriatic arthritis but I'm unconvinced. I have no swollen joints and no psoriasis. I have soft tissue pain in arms and legs, some nights I lie in bed and feel like I'm tingling all way to finger tips and toes. It's not painful but very very uncomfortable. I frequently feel overwhelming fatigue. I walk a lot slower than I used to and get leg pains if I walk for too long (I was able to walk 10 miles a day two years ago). I do have pains in my toe joint (no swelling) and have OA in hands. I can no longer go barefoot as my feet feel tender, in fact I can't really endure thin soles either. Do any of those symptoms sound like psoriatic arthritis? I just don't know. Sympathies to all those suffering.

Yup.

Sorry you're a member of the club.

I have arthritis in my hands due to hemochromatosis (thumb, index and middle fingers, a classic sign) and OA in ankles and spine, as a result of injuries.
I can't walk anywhere without pain, using codeine/paracetamol to take the edge off and duloxetine, which has some painkilling effects too.
Was diagnosed with hemochromatosis in my early 40s, it was treated eventually (venesection) which arrests the damage. The brain fog left me barely able to function and worsened my mental health problems.

Thanks for responding neverdropyourmooncup.

I was diagnosed with Juvenile Rheumatoid Arthritis (now called JIA) aged 8. I’m now in my 40s and still have JIA which is unusual, either it goes into remission for good or pops back up as an “adult” version.

Those of us who have the autoimmune arthritis know all about the fatigue and pain that comes with it. I can’t walk far without a lot of pain, people don’t get that at all, even my exH who thought I was simply being lazy. To get an idea, try walking with stones in your shoes. You can’t, it’s too painful.

While I wore splints on my hands & forearms as a child there was nothing for my feet, which means the bones have developed wherever they feel like, so I’m a size 5, 6E width and that’s without any swelling.

For those of you wanting nice shoes go to www.widerfitshoes.co.uk

I nearly cried in relief that they have my size/width combination and don’t look like old lady shoes. I even got some dress shoes!

I’ve been really well these last 3 years as I started on leflunomide. Alas I gave myself a flare by queuing in the freezing cold last week. Now I’m struggling to manage the stairs again. Hopefully it will pass soon.

Arthritis sucks. Anyone who has it on here gets a hug from me because it’s a shite disease.

@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.

I assume you are not a HCP, or at least I hope not. Your understanding of arthritis is limited, and your empathy is lacking.

I have psoriatic arthritis. It's not caused by wear and tear, being overweight or anything self imposed.

It's an autoimmune condition, linked to the skin condition psoriasis.

And right now, I'm in a lot of pain with it.
I've just had covid so I'm not allowed to take my weekly injection of methotrexate. As a result, as well as my immune system being rubbish due to having been ill with covid, I'm having a flare up. The pain is horrid, the fatigue is even worse.

So, maybe it's time to do a bit more research about the condition, before making such statements. There are a lot of forms of arthritis, many of which are not wear and tear. And even those that may be linked to 'wear and tear' it's simply not quite that simple at all.

I had no idea there were so many of us creakers here! Much tea and sympathy to all!

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?

I'm certain that I am addicted to codeine - of course I will be! But so what? I don't misuse it, never have. I never go over 8 Zapain per day (and try my hardest to stick to 4), I don't do that thing where you buy a load of Co-Codamol OTC, crush them up and separate the codeine from the paracetamol. In short, I take prescribed medicine as directed by my GP. What is the bloody problem?

I bet many of you have had all sorts of useless suggestions over the years (turmeric, anyone?). Bloody mindfulness too - mindfulness can take a running jump! I would be interested to hear what works for others though - every little helps!

One thing I like is Deep Freeze spray. I keep it in the fridge to zhuzh it up a bit and it is lovely on swollen hands and feet. Don't get it in Boots or the supermarket though, it's around £2 cheaper in Savers, B&M and Home Bargains.

Get yourself some Flexiseq cream to rub on your knees Roberta. It can also by used on your hip or pain in the shoulder (not shoulder blades), it’s very specific about areas to use it on.

I got mine from Amazon, my consultant recommended it but said he wasn’t able to prescribe it. Won’t get rid of the pain completely but it helps an awful lot.

Have you ever been offered Leflunomide or methotrexate Roberta? Might be worth going back to the gp and ask to be referred.

I took paracetamol and naproxen for years. I requested a referral after my friend got diagnosed and told me to get myself on one of the above meds. She was right, the last 2 years are the best I’ve felt in a long time.

[quote IWishTheBishopWell]@MedusasBadHairDay (great name, btw) - I am like you - nail psoriasis and EDS.

Ask your GP to refer you to Rheumatology - anyone with psoriasis and joint issues should be reviewed for suspected PsA.

I have seen more Rheumy's than I can count, starting in 2010, when I was 22. I was diagnosed with fibromyalgia. Then JHS when my physio noticed I was hyper mobile and flagged it to my Rheumy. Eventually diagnosed with EDS.

I developed nail psoriasis at 23, I had lots of pitting in all finger nails and some detachment. I also developed hand stiffness and slight swelling at that time plus achilles issues (another red flag for PsA). Saw several Rheumy's for suspected PsA - one got as far as giving me a provisional diagnosis until my hand ultrasound was unexpectedly normal and I was discharged.

During lockdown my elbow swelled up (still swollen and sore, 2 years on pretty much to the day), my nail psoriasis flared up and I struggled badly with my achilles so re-referred.

When I saw current Rheumy in Nov '20 she was convinced my EDS was the cause of my issues. She told me she thought my issues were EDS and tendonitis of the elbow but due to nail psoriasis and some mild inverse psoriasis in my belly button she ordered ultrasounds and xrays. The US picked up the inflammation and I got my diagnosis.

Before she realised it was PsA, she said any Rheumy wants to see anyone with psoriasis and joint issues and told me to always feel I could ask for another referral. Other Rheumy's assessing for PsA in the past told me similar.[/quote]
Thank you, that's really useful to know. I've got to book an appointment with the gp to sort out the ingrown toenails (another psoriasis gift) so will ask about a rheumatologist referral at the same time

@RobertaFirmino

I had no idea there were so many of us creakers here! Much tea and sympathy to all!

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?

I'm certain that I am addicted to codeine - of course I will be! But so what? I don't misuse it, never have. I never go over 8 Zapain per day (and try my hardest to stick to 4), I don't do that thing where you buy a load of Co-Codamol OTC, crush them up and separate the codeine from the paracetamol. In short, I take prescribed medicine as directed by my GP. What is the bloody problem?

I bet many of you have had all sorts of useless suggestions over the years (turmeric, anyone?). Bloody mindfulness too - mindfulness can take a running jump! I would be interested to hear what works for others though - every little helps!

One thing I like is Deep Freeze spray. I keep it in the fridge to zhuzh it up a bit and it is lovely on swollen hands and feet. Don't get it in Boots or the supermarket though, it's around £2 cheaper in Savers, B&M and Home Bargains.

Thanks so much for this Roberta. I too am on Zapain and cheerfully admit I am probably addicted to codeine. Nothing else helps though. I take two as soon as I wake in the morning and on a good day I don't think about taking more until late afternoon or if I know I have to do a lot of walking so I make sure I take some before I leave the house. I make sure I can take two before bed to ensure I get at least a few hours sleep before I am woken in pain due to having bent my knee in my sleep. Thankfully I don't get the painkiller rant from anyone. My two adult DC understand my pain problems. I had a brain haemorrhage aged 15 wich triggered psoriasis. I started with psoriatic arthritis at the age of 22. Oddly it disappeared when I was pregnant with DC1 when I was 27. That was bliss. It came back with a vengeance afterwards though. It disappeared again in my second pregnancy which makes me think there must be hormonal implications affecting it. In recent years I have developed osteoarthritis in my feet and other joints. I am now 61. I have been on methotrexate for over 20 years now; having to come off NSAIDs due to them causing bleeding in my stomach. I have downsized to a tiny bungalow now. Only having a small house to look after and no stairs is wonderful. I am now waiting for knee replacement surgery.

I had my right hip replaced in Oct 21 at 46 due to hip dysplasia and OA, I had no idea that I had these issues until my on and off hip pain became permanent and I saw a specialist. However, I'm still suffering with a lot of pain 4 months on and the latest MRI shows significant problems with OA (and other issues) in my lower spine.

I am absolutely so fed up of being in pain, having to think about the logistics of everything I do and not being able to live my previous life. The weight is also piling on as I can't be as active as I was which I know isn't helping the situation. I'm due back in work in a few weeks and am completely dreading it as I'd often walk 8000 steps during a working day which will ruin me now.

My sympathy goes to everyone struggling and living with chronic pain for whatever reason - it really isn't fun.

OP, thank you for this thread. I also have autoimmune arthritis, and it has really affected my life. So much pain and so little energy. It limits the range of activities that I can do and my effectiveness in the world.

My mum has really bad debilitating exercise as a result of being very sporty. Her younger self would be horrified at how badly she is affected.

Very grateful for this thread.

I was diagnosed 4 years ago and after changing rheumys a lot I now have a fantastic one who actually listens to me. I started biologics in October and it’s made a big difference to the pain. MTX side effects are the worst- my hair keeps falling out and I vomit a lot.

@MedusasBadHairDay I have hEDS and RA, don’t let them fob you off if it could be IA.