How did you feel when you were diagnosed with RA? - NRAS

NRAS
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How did you feel when you were diagnosed with RA?

I was diagnosed with RA yesterday, and currently I’m feeling pretty overwhelmed and sad. I’ve been in pain for 3 months before I got diagnosed, so it’s a relief knowing what’s the reason behind the pain, but I just feel so sad. I don’t know how to make myself feel better.

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I felt alarmed because I'd seen my Grandmother crippled by the disease and she started in her twenties, passing away in her late eighties. A life on paracetamol and pain. Fortunately, modern treatments are highly effective. I live a more or less normal life so am far better than she was. I now have a lot more sympathy for her with the wisdom of hindsight and experience!

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I felt completely bewildered. Like Hawker I had first hand experience of how RA had affected my aunts and my mother - all I could see was that same path for me. But things are very much different now. I do exactly as I am told - drugs, physio, exercise etc and my life is very good. I have ups and downs but on the whole I am nearly normal!!

Ask lots of questions, don’t google too much, this is the best place for good quality information. NRAS have some fantastic booklets and great info as well as a super helpline.

Keeping positive has been the best thing for me. I try not to think about the things I can’t do, the pain and inconvenience of it all and very much focus on the good things I have.

It’s a curve ball for sure, but it won’t beat me.

Big hugs to you x

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It's like having a bereavement getting a diagnosis of a long term illness like Rheumatoid Disease. You start off feeling a bit numb, can't believe it, I'll wake up tomorrow and I won't have it. Then comes the anger...(although for me, I don't think this has ever really gone) ...why me, what have I done to get this, why is everyone else leaping about doing things that I can't do, and often, anger at people who don't understand, at the medical team for seeming so uncaring and evasive. Then comes acceptance (at least partially and most of the time) and getting on with life as it is now. Making modifications to how life is lived and making the most of what can be done.

But at the beginning it is hard - hard accepting the diagnosis, accepting the trial and error method of treatment, waiting for progress, for tests, for appointments, for information.

So when you are feeling down or frustrated or puzzled, this forum is a great place to come for support.

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It didn't come as a massive shock on the day. After over 20 years of occasional joint pains is came as a relief to get a diagnosis. The delayed reaction was grief for the life I thought I was going to have, guilt that Himself would have to do more and maybe care for me, confusion, feeling overwhelmed and fear of the future. It gets better. Promise

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I am so sorry you’ve got this Kitty; I’ve only been diagnosed just over a year and felt totally shell shocked at first. Can’t add much to above great advice bar it does get better than this honestly. You’re probably feeling pretty poorly at mo’ as well which doesn’t help: first 6 months were worst for me. I did get referred for a CBT course via GPS for long term conditions which helped (yeah not a cure I know 😀).

Kindest regards xxx

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I think we all know how you are feeling, I have only been recently diagnosed - June ish time. Have a look at all of the NRAS booklets they are a great help. I am waiting still for the drugs to take effect - have only been on them a couple of months now - so fingers crossed they start to work soon. I just was glad to finally have an answer and although it wasn't the best news, it also could have been a lot worse. I hope you have someone to support you through this, it can be terribly frustrating at times especially as you can't do everything you used to be able to - well I can't at the moment, so having someone to help and moan at is great. I do try to pace myself, but still at times do too much. I am still trying to keep positive. Sorry you have to join us, but I find this forum such a help. Hugs.

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I was a 52 years of age when my GP told me my blood test showed I was positive for RA. I knew next to nothing about RA at the time, or any other diseases come to that, and wasn't particularly concerned, but within a couple of months I was experiencing serious pain in multiple joints and could see why my GP had such a concerned look on her face when she told me. :-( That was 15 years ago, and to be perfectly honest...it's been a downhill story ever since. :-(

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If you really feel that wishbone...have you spoken to your Rheumy team & discussed what they can do to help you start to be more optimistic about your future?

We all look back & think "If only", but on the whole I think most people find a way of carrying on with their life in a postive way. 15 years is a long time just thinking tomorrow is going to be worse than yesterday.

Do ask for some support so that your next 15 years can be happier.

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Hiya AC,

Things have picked up a bit since I started baricitinib a couple of months ago, but with having big changes made to my previous active outdoor lifestyle due to damaged joints and diseased lungs, both caused by 3+ years of poorly controlled RA, I don't think having a discussion with my rheumy team is going to help any. It might work for some but not me I'm afraid. Don't get me wrong, in no way am I allowing things to make me depressed, or to feel sorry for myself. In fact I'm quite a cheery soul on the whole though I can see how someone could think differently by the way I've worded my above post. My intentions there was simply to be honest with how things have turned out for me, which no matter how brave a face I try to put on it - ain't too good.

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Hi WB.....I'm so sorry you had more than three years with no treatment...did your GP just not spot your symptoms....if so that is unforgivable, but it is also a cautionary warning to those who decide to refuse Dmards & rely on diet isn't it?

Of course a good healthy diet helps, but no gluten free bun is going to stop joint or lung damage. If ithey could we'd all be prescribed them.

However we approach our treatment ...it seems it always comes back & bites us at some time doesn't?

I wish you well WB, &'really hope the Baricitinib finally turns out to be the drug you have been waiting for.

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Nothing to do with my doctors not being aware of my symptoms. The reason why I could not go on DMARDs or biologics was because I have another condition that makes me prone to recurring infections, two of which turned to sepsis while taking immune suppressing meds. It was during this period when my RA was out of control that the inflammation probably got into my lungs. Been on hydroxy for the last couple of years, which being a non-immune suppressant has kept me infection free since I've been taking it. It's also helped make my RA bearable, but unfortunately did little to slow joint deterioration.

I've been on a low dose of baricitinib for about 3 months. Early days yet, but so far so good.

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Hope everything continues to keep you steady on the right track .

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Thanks AC, hope things go well for you too.

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Being 20 years in nothing surprises me any more....well almost.

I can drive, cook, walk a bit, just painted my decking, but still hide my head in shame at having a wheelchair at airports .....I can do the walk - slowly - but just can't stand in queues .....would be mortified if I just descended to the floor.

It's been a long trudge, but I think I'm as well as a lot of my peers without RA.....but oh I do wish I could play tennis with them. in my head I beat them every time!

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Well, that's not bad going for an aged crone. :-)

Although the baricitinib is helping most of my joints it's had little effect on my feet, which hurt most of the time but obviously more so when I'm up and about. I've been told that they really need surgery, but being the big coward that I am, I can't see that happening quite yet. Though not much fun, I can walk reasonably ok for about 100 yards or so but it's no go after that. Only my thumb and forefinger have any dexterity on my right hand, but it's surprising what those 2 digits can do on their own...painting the garden fence is out of the question though. I'm right handed so have had to train my left to take over as best it can. No way can I drive a car, the main reason being that I've never learnt to drive. :-) I have a few other health conditions to contend with, but it's the infections and especially the condition of my lungs that are my main concern. Other than that I'm in superb nick, and my rosacea aside, look and feel like a million dollars. ;-)

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I always think there is someone worse off than me...although I had flu the first time ever in January,& at times I really thought my number might have been up...but after a couple of weeks I started to feel better.

Sadly a week later my water tank leaked through the hall ceiling which ended up o the hall floor & I had no heat or hot water & had to move into an hotel. That made sure I got up & about!

But I felt like nobody could have such bad luck as that except me!

Luckily I had a month long trip to the Canary Islands planned for late February....& I actually made it.

So Good Fairy won after all.

I think having your lungs so badly affected must be really trying fir you......at least I can fly off somewhere to the sun at the drop,of a hat......but I guess you probably can't fly.

Bedtime now....this crippling tiredness catches up with me sometimes ....i ve had a busy time lately.

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It never leaks but it pours as they say, or something like that. Bet you were glad to escape to the Canary Islands for a month.

Sleep well, AC

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Sorry you've had to join our gang kitty and at the moment everything will seem against you and it will take time to come to terms with it but you will get there, once they get you on the right treatment things will improve, I've had RA for 4 years now and it took me a year to come to terms with being medically retired at 52 but and there are plenty bumps in the road but you bounce back and everyone on this forum helps each other out xxx

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Good reply popsmith. I've been on this Rocky Road for 20 years now,& of course there have been times,& probably will be again,,when I have thought 'Why Ruddy Bother'?

There will always be days when another symptom appears, or the latest drug fails, but these days there are so many options available it's so much kinder to yourself, and your loved ones, to be honest with your rheumy team, take their advice, & take the drugs they advise.

As you say - getting on the right drugs isn't a quick fix, but eventually it will happen.

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I cried....lots. Totally miserable as well as being in pain. And I made the mistake of looking at Dr Google so I scared myself stupid. I reckon it took a good few months even to make the first steps of accepting this. As oldtimer says its like a bereavement.

But be kind to yourself, look after yourself and things will improve one way another. My life is now near normal, and I've been diagnosed 8 years.

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Actually I felt an awful lot worse before I was actually diagnosed. I was in so much pain for so long, and was beginning to wonder if it was all in my head!

When I finally found out what was wrong with me, I felt a bit better. Once I knew I could be a bit more proactive. Don't get me wrong, it ain't been a picnic, but the knowing is better than the not knowing (for me at least). It does get easier.

Welcome by the way!:)

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I just could not believe it. My shoulder and finger was aching and swollen but Rheumatoid never entered my head. I was distraught because I knew my great aunt was in a bad way with this disease many years ago and my imagination was running wild! It's very hard in the beginning but medication is very different to my great aunts days! It did feel like a bereavement, like a part of me had been taken but I am alive and better than I was. Saw my Rheumy today actually and it was a good consultation. To remain on Baracitinib and exercise as much as possible but not during flares. All the best. Xx

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Hi and sorry you have joined this group, but its a supportive and helpful group.

How I felt was very mixed. I felt so unwell I was pleased not to be told to go away and take 2 paracetamol. I was confused due to little knowledge and its been a process of feeling bereaved, guilt and confusion. Its been 2 years and things have improved but a way to go yet.

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Hi kitty sorry to hear you have RA, when I was diagnosed I was just so pleased to know what the pain in my hands was I know the medication is scary when you are told about it but I was so please that it stopped me having flares every other week I was on tablets to begin with but changed to metrojet which I found was a lot better I still get flares every so often but as I always say I am one of the lucky ones I can put up with the stiffness in hands and feet but when your hands flare that is terrible I hope medication works for you and you begin to feel a lot better and not so sad soon x

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Hi 👋

Thank you so much for all your kind words and support! It helps to know that I’m not alone in this battle. I’m so young(23 to be exact) and that shocked me the most when I received the diagnosis. Thank goodness I have a good dr, so I think I’ll get through this grieving stage.

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It was 15 years ago I felt as though someone had knocked me down I was devastated. I lost my job had to change our mortgage to interest only and commenced a long and bruising battle to get DLA. Even now deep down I cannot quite accept that this is it. My advice: don't waste your time on friends and family and rude people who after several explanations just don't accept you have a serious long term condition because they can't see it your energy is now precious; take full advantage of the wonderful support and information offered by NRAS; join a support group if its a all possible as it will help; be very kind to yourself and put yourself first; try to find a creative outlet of some kind - I make my own clothes (with help) because I need comfortable clothes that are easy to take on and off which most fashion shops don't sell; appreciate those who are there when you need them - my partner is fantastic at practical help, without him I would have no life and I try to make sure he feels appreciated; take the tablets or have the injections etc. give it a fair go some side effects do lessen over time; read spoon theory. Your life is not over and it is possible to be still connected with the world but in a different way. I wish you all the very best.

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I've been diagnosed for less than 2 years. To be honest I'm still not sure how I feel about it all. Surreal possibly.

Life is very different, but I have tried to do new things and develop new hobbies photography, tai chi, researching my family history are a few things I can do. I focus on these and have learned what really matters in life...having people around who understand and are supportive is really helpful.

If you get a drug that works for you, you will have a good quality of life. Fingers crossed.

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