To ask how your rhumatoid arthritis affects you or someone you know

[BuffyTheBuffetSlayer]

I'm sorry, posting for traffic as the health boards can be really quiet.

I have just been told by the physio that he believes I have rhumatoid arthritis due to pain in several joints plus being young and x-rays showing knee arthritis, so he made a referral to rheumatology.

But I know very little about it other than the generic info through Google. So I was wondering what early symptoms people experienced and how has it impacted quality of life later on? Is there anything I can or should be doing? Has anyone been referred with similar symptoms and it turned out not to be rhumatoid arthritis? My head is still spinning at reading 'degenerative disease' and 'fused joints'!!

Sorry, only to use diclofenac for a few days at a time

That's me on the rheumatology waiting list now. There's no wait time specified. Having read through everyone's posts again, I'm so unsure if I actually have RA.

My symptoms are a bit all over the place compared with everyone else's. I don't get stiff painful hands unless they're really cold, but that can just be circulation?? The same toe on each foot is starting to deform but they're never painful. And although I do get a lot of back pain, most of my pain is from my knees down - hips down only on a handful of occasions when the 'mystery pain' is at its worse. I'm actually worried now that I'm on the waiting list that yet another department are going to brand me a time waster.

Good news you are on the list. Rheumatology deal with a very wide range of things as there are 100 plus types of arthritis, hopefully they will be able to get to the bottom of what is going on.

Joints deforming accompanied by the pain you have absolutely needs to be checked out 💐

I am seeing Rheumatologist privately. ESR raised (though lower than has been in past) Rheumatoid Factor negative so I don’t qualify for NHS referral. GP says would do the same in my position, thinks there is something going in and mentioned seronegative RA.

Been talking to Dad who recently has been diagnosed with Psoriasis, apparently my Aunt and Cousin have it too so that is interesting and adds to our already strong family history of autoimmune issues.

Hi @Volterra sorry your appointment didn't go as you hoped. What exactly is seronegative RA? I can't imagine how frustrating it must be to have your gp believe it's RA but the nhs rheumatology department shut you down. Did they know about your family history with psoriasis?

It kind of did go as I hoped as I just wanted to see rais3d ESR so I knew I wasn’t imagining it all 😀

I’d already decided I was going privately so have the outcome I wanted, I worry for those who can’t afford it, what happens to them? I can’t remember if I said about the Psoriasis. Dad has only just been diagnosed the last couple of weeks and I had no idea about my Aunt amd Cousin when I saw the GP. Just woken to message from my Brother, he has it too.

My mum was diagnosed with RA in her early 50’s. She’s now late 70’s so been living with it for a long time.
She’s on methotrexate too and occasionally has steroid injections if specific joints get painful.
I admire my mum as the RA has never stopped her doing anything and she’s still unbelievably active at her age.
Her dad (my grandad) had it also but died relatively young. She was determined it wasn’t going to affect her like him and with the advancement in drugs has managed to do that.
They’re making advances in treatment all the time and I do believe a positive outlook helps.
I take after my mum a lot and hope, if I’m diagnosed with it, I’ll be able to adopt the same attitude to cope.
Good luck x

What exactly is seronegative RA?

If I remember correctly, it means the blood tests are not showing specific antibodies. Diagnosis is then based on symptoms and x-rays.

To be honest, I've taken the above from what my Rheumatologist said to me at my first appointment, when he was telling me about RA. I'm seropositive, (RF was through the roof), so I've never looked up seronegative RA, so it would be best to have a read up on it.

@Volterra ah I see, sorry I misunderstood. Private could be an option for me, but because I'm still just a student relying on DP it would have to be thought about carefully. Ideally I'm hoping to get a definitive answer either way rather than ambiguous results. How quickly will you be seen through going private?

I'm also on the orthopaedic waiting list. I was under the care of an orthopaedic surgeon a few years ago where it was determined my plantar fasciitis would need plantar release surgery on both feet along with calf tendons being cut. The idea terrified me so I declined. Now I'm at a stage where I'm tired of trying to manage the pain along with the stigma of opioid painkillers that I asked to be put forward for it again. So if its not RA then I guess I'm pinning my hopes on getting better through that.

@Kalettesarethebest your DM's positive attitude and determination is inspiring, much like previous posters here. I was pretty frightened when I was first told RA was behind all my issues and pain, but after reading the responses here, and how advanced medication is now, I feel like everything will be OK.

Thanks @PhilCornwall1 I will do some research into it. I know very little about the tests and how it's diagnosed beyond what's been mentioned on this thread.

Thanks again to everyone who has taken the time to post and share your experiences. You all sound amazing and strong!

Sorry Buffy , I missed the seronegative bit. Yes basically it isn’t showing Rheumatoid Factor, there might be one more as well but i’m not sure. Think I read about 20% of people with RA don’t have positive RF. They will then diagnose from looking at inflammation markers in blood (ESR or CRP), xrays, joint examination etc.

The Consultant I want to see going away so it will be a good few weeks. Usually I think it would be a couple of weeks. Can totally see why you don’t want the surgery.

If it is RA it is going to be ok🌷 I think I might not be joining you with a RA diagnosis but may well end up with a Psoratic Arthritis diagnosis. Having had a read I think I have had mild Psoriasis in the past plus my nails go a bit weird.

Just saying I love hearing everyone's positive stories!

Sorry not been back to the thread for a while, been nursing 2 toddlers with chest infections ontop of very little sleep. They're finally on antibiotics and getting better!

@anotheronenow I love the positive stories too 😊

@Volterra thanks for the info, I looked into seronegative results aswell as other tests they do. I hope you see your consultant soon now.

I'm kinda freaking out a bit. My hands, fingers and toes have been in pain all week. It's like the joints feel a sort of burning ache. Is this what RA pain feels like? I have had this pain before but never as bad and never really paid much attention to it. A couple months ago I helped my DF with a manual job, after my hands hurt so much and were so stiff for almost a week before I could make a fist. I just assumed it was because of the gardening, although it's never happened before. I have had toe pain lots over the years but I have chronic pain with my feet. I guess before, my doubts about having RA centred around not recalling experiencing stiff painful joints in my hands and feet but I'm now thinking I have all along but not paying any notice for assuming it was down to other things.

My hands and feet are very swollen tonight, I've had to take my rings off again. I realised the same toe on each foot is deforming at the 1st joint. They used to be straight! But I also noticed that the same finger on each hand is also deformed a bit, both end joint. Urgh!! I'm just driving myself crazy wondering if it is or it isn't!!

Hi @BuffyTheBuffetSlayer, sorry you are in so much discomfort. I've been lurking here also waiting for answers so I feel for you.
I have a rheumatologist appointment on Wednesday. My hands are my main issue (tapping this out slowly) but I too have had on off pain for years. Now noticing it as it is much worse and seems more on an RA trajectory (suddenly worse over a few weeks). Noticing how hormones make it shift, too.
Just jumped in to thank you for starting this thread. It is helping to me not feel I am imagining it all. 1st bloods we're ok but they didn't look at rheumatoid factor for some reason so just done another batch. Moved to a new Gp as moved house and so pleased I'm being heard. Just need an outcome. Pain and fatigue hard to deal with.

Hi @BugPlaster thanks for delurking 😊 How did your appointment go? I'm getting pain in my hands now almost every day. I still think it's strange it's only just started now! My fingers and knuckles get very swollen too. I wonder if it is RA that it's just finally reached my hands after causing havoc with everything else!
I still haven't heard anything about when to expect my rheumatology appointment. I do hope it's soon, my hands are sore, not in agony tho but it's all day long so really annoying. My feet and knee flare up has calmed right down which is brilliant! That pain was incredible, especially trying to run after toddlers too.

@BuffyTheBuffetSlayer just chiming in to say I am sorry you haven't got your appointment yet. Ibuprofen etc is supposed to be the best for pain/inflammation but you must already know that.

Fingers crossed for you. I am still hanging in not taking methotrexate but only Plaquinil. I don't want to believe it's RA as well as Sjogrens... But like you, I've done a lot writing off weird joint pains in the past.

Good luck and keep us posted.

@BuffyTheBuffetSlayer thanks for your reply. The dr doesn't think it is RA for me, so that's good news. I find it hard not knowing when it's causing me pain every day but I am due and X-ray so maybe that will help.
I got very emotional in my appointment which was embarrassing but pain is pain. The dr seemed to just think I should just be happy it wasn't RA.
I hope your hands ease soon. My were hurting on rest as well using them but I hope you can rest them between parenting toddlers!

Hi Buffy, Just wondering how you're doing and if you got your appointment through yet?

@ AnyName1

I'm a member of a few arthritis groups and have never heard of anyone being completely bed bound etc. I would question that.

^@AnyName1 so because you haven’t encountered it in your few groups it isn’t real? Such an ignorant comment. My MIL is pretty much bed bound from RA.

I managed to lose this thread. Bugplaster I hope the X-ray shows something that sheds some light on what is going on.

Buffy sorry about the pain and I hope appointment comes very soon. I have definitely ignored a fair bit in the past when I look back now.

My appointment is soon. I still think I am quite possibly heading towards Psoriatic Arthritis diagnosis but time will tell. I had a really good week a few weeks ago where I was nearly pain free but it’s flared up again, albeit not quite as bad as it was.

Hey everyone, so sorry for disappearing! Been having a mare irl from a bereavement, to major house repairs and sick toddlers just as uni started back!

@anotheronenow @Volterra thanks for remembering. Unfortunately I haven't heard anything about the rheumatology referral since the letter confirming the referral has been made!

I do have a small update tho, I got a call today from the hospital offering me a cancellation to see the orthopaedic surgeon with regards to my plantar fasciitis and shortened calf muscles. I saw him years ago but turned surgery down then. I'm ready to go for it now so I'll let him know the thinking is that it is all down to possible rheumatoid arthritis. Maybe he can even speed up the referral? Probably wishful thinking!

The knuckles on my hands are quite swollen most days now and my hands ache on and off. And I think I'm about to start another flare up soon, I can feel my knee abd feet getting worse already.

@drpet49 totally agree. As I explained further up the thread, I met someone completely bed bound because of RA who's DSis had power of attorney. So unfortunately it is definitely a reality for some.

@Volterra I'm pleased to hear you shouldn't have long to wait for your appointment now. Hopefully something can be confirmed so you get answers abd can start proper treatment.
I read about psoriatic arthritis, I'll be honest I don't know which is worse!
Let me know how you get on if you don't mind.

Another one here with RA (well ankylosis spondylitis, but same family of conditions). Started when I was a teenager, am now 44, and I’ve had pain free episodes, major flares and a lot of in between. I get a lot of pain in my lumbar spine, due to sacroiliitis as well as degenerative changes caused by the inflammation. I also have bulging discs, painful and swollen knees, feet and hands. I’ve had carpal tunnel syndrome in both hands but successful surgery put that right.

I’ve been on just about every anti inflammatory and DMARD you can get, and since changing rheumatologist have finally started biological stuff last year. It’s a bit late since I have a fair bit of mechanical damage, and I don’t think they’re working as well as they did at the start.

Fatigue is a major issue for me - I keep getting told to exercise but between working a demanding full time job, and having two DC, one of which has autism, it’s not going to happen. I have no energy left for anything else! Plus I’m having a fair bit of random bony pain, which is normal this time of year - I always seem to flare more as the weather gets colder, and my dad who had RA always said the same.

I have days where I think I can do more than I actually can, over do it, then pay for it for days after. You’d think at my age I’d bloody learn but I’m too stubborn and won’t be told what I can or can’t do, even by my own joints 😂