Second rheumatology consultation today and I've been told I have sero neg inflammatory arthritis.
I thought maybe I could have anykolysing spondylitis (spelling?) But Dr thinks RA.
I knew if my symptoms didn't go away after a course of steroids I would have to start on sulphazalazine (again sorry spelling prob not correct) but to be told I have RA I'm upset.
Over the last months since symptoms started ive been on a roller coaster, up and down from day to day even hour to hour and I'm so fed up of feeling sorry for myself. I want to live my best life and I need to find a way to feel at peace with what I've got, how do you guys cope ? How do you feel about RA and what gets you through .
Liz x
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Marionfromhappydays
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I feel for you darling i really do. How do we come to terms with RA, well don't give in darling, yes your going to have dark days when you don't want to crawl out of your shell(and yes you have those days) let yourself have those days, but then the next day put your big girl knickers on and start fighting all over again.
Acceptance is a word your going to hear a lot of in the first few months. It will take a while to get the right drugs that work for you, what works for one doesn't always work for another. Some will have bad reactions to certain drugs others won't have any reaction at all.
I have had RA diagnosed for 17yrs now and i still have problems with RA. There is no cure for this disease and don't listen to these people who say well i took this pill and it cured my ra it doesn't because they probally didn't have it in the first place.
Now there are a lot of great people here and we have a great sense of humour and that is what keeps us going. I better stop before i go on for ages. Enjoy the site and the people. I love them all.xxxxx
Well said sylvi. That's what I found the hardest accepting RA andthe bad days kept pushing my self and I had a massive flare 6 years ago now ended in wheelchair could not walk at all all knees ankles hips swelled. I was in a state mentally and fiscally forover 2 3 weeks took me a few month to get back to normal. I've learned now it's OK to push your self abit but when your body is telling you to rest you need too. Xx
Your in shock and understandably so . Coping like treatment and symptoms is individual but the biggest thing is patience. Learning how to manage your disease takes time . Resting rather than pushing yourself. I was a clean freak my house was spotless but I’ve learnt I can’t keep up that standard now and things have slipped . I was about to get a cleaner before lockdown and when things are more settled I will. Treatment is trial and error and takes time. Some people do really well others don’t and as you say things change by the hour . If you know something aggravates your joints or causes a flare finding away to adapt is the answer. I kept a diary it helped me and my RA team.
I’m sorry you have been diagnosed and it’s difficult not to be consumed by it we are all guilty of that and some days are better than others. The is forum is great we suffer it we understand it and we listen to the good and bad your not on your own.
Take time to let yourself come to terms with it, accept that it's a shock to mind and body and that you'll need time to recover from the initial shock, allow yourself to get emotional - angry, sad - and then try to stay as optimistic as possible. I was diagnosed last May/June and took the summer to go through all those stages (I'm freelance) and then started work again - albeit with a slightly reduced workload (my decision) - in the autumn.
Hopefully you've got a good rheumy team and will have access to a nurse helpline (brilliant!) but you'll find out about that in time. I found that after the initial consultation and tests, it felt more manageable once I'd seen the nurse, started treatment and been given more information.
This is a brilliant place for support and information so keep reading and posting; resist the temptation to Google as that way madness lies! 😱😂
Yeah you are so right, I guess I'm feeling a little scared at the moment, I've googled myself i to a frenzy !!
I am self employed and my job is quite physical so am unable to do at the moment ; All these things whizzing around in my head. Time I think will help.
I know exactly how you feel then. I decided to try to take pressure off my joints in every way possible in day to day activities so that I'd be more able to use them in the ways I needed for for work. I've done the hand exercises I was given every day, I use my phone or tab more rather than a pen/pencil, I do less cleaning (!) - hubby has taken over the hoovering - I've stopped knitting, I accept lifts to save me driving as much, I bought a backpack-style work bag, I arrange my workspace so that I can sit down rather than standing all day, oh lots of little things. It's a case of priorities, I suppose. All these things have helped in themselves but it's also made me feel that I'm in charge and can do things to help myself which is empowering. "Big girl knickers" as Sylvi would say 😉😊
Both are long term conditions, so just as bad as each other really! It's getting your head around having a long-term condition that's difficult. It's like a bereavement - denial, anger before acceptance (or so I'm told that acceptance comes...I'm often still angry at the limitations of it all after many years!)
Well for a start remember RA is treatable and I like most people just take a medication or medications and forget it. RA won't kill but you'll die with it hopefully a long time in the future. I don't mean to sound harsh but get on with life, don't dwell on it at the present time it is difficult due to Covid but honestly RA is a shock but don't make too much of it in your head. Before diagnosis is the worst bit and its never limited me other stuff has but never RA. These days so many medications are available to us that if one doesn't work another one will and if not that one then another. Be warned that you'll get all sorts of strange things on Dr Google but try not to read it, be guided by a healthcare professional and be glad its not something much worse. Yes pain is debilitating but once under control it doesn't hurt and you can achieve remission. I take 2 RA medications not really an issue a few side effects at first but not too bad really to lead a normal pain free life. Don't stop doing stuff as it'll make things worse so try to continue as near normal as you can and its vital to be aware but not frightened of the condition.
Good days and bad days and remember how you are and how you cope with pain and what drugs do and don't do for you is all very personal. A year on and not in remission and still in pain, fatigue and other issues. I just stay positive that at some point I will find what works for me. Patience is key but if you don't have much for yourself but plenty for others, this can be a tough one to deal with.
Some can pop a pill and all ok BUT some can't and takes more time than the norm though never sure what is 'normal' in RA world.
A year really isn't long, don't forget most RA meds take 12-14 weeks to work. So stay positive because it's not just about popping a pill but attitude too. I've had RA for many years treatment now is so much better than 10 years ago even. Normal is remission as far as I'm aware.
No it is not long but even the nurse and GP have said I have had no let up/remission and pills and injections not making a difference and I am getting worse. Also if it says 13 weeks and 8months later still no better than something is not right.
The RA nurse agreed I have waited longer to change meds due to C19 as on week 40 no changes things worse therefore something not right.
My view is I want to get to remission, so I can be a positive force in my life but with crippling fatigue and brain fog I am lucky to get out of bed at the moment and pretend to as many people as possible I am ok.
Also try accept that for a while you just have to take a step back & give the drugs a chance to work.......rest & don’t try to run a marathon.....you might feel rotten but if your rheumy suggests you persevere a bit longer - do. It’s no good thinking that if the first pill doesn’t work 100% straight away you just swap. It’s often a long journey to get to somewhere bearable....but the wait is worth it.
I agree with others that a year is no time at all in RA world. It took years for me to get my RA under some kind of control so I could have some kind of life and even then it never lasted. Meds are so much better nowadays and you don’t have to put up with some of the horrific side effects you used to, rheumy’s seem much more amenable now to change meds too. I must agree that, as others have said you do need to do your bit too and adjust your life totally to help the meds work or it will take much longer and you will keep flaring.
The first year is shit (no point in trying to sugar coat it!). I was an emotional mess, not helped by oral steroids which mess with my head. Angry, frightened, despondent etc, etc.
Hated the whole idea of taking drugs, spending hours in medical facilities, being limited about what I could and couldn’t do. But eventually calmed down, kicked myself up the backside, and tried to get on with it as positively as I could, Made my focus to look after myself as best I could, so I would be affected as little as possible.
Hugely helped of course by responding well to the drugs and getting into remission after about a year, so in terms of day to day activities got back to pretty much normal.
But I would say don’t try to deny your feelings - even tho’ few rheumatologists are interested in the emotional impact. However try to put a limit on it, and look at how you could move on. You will get there.
On my 2 week course of steroids when I first started 1 day I couldn't stop crying, they made me emotional and anxious, I mentioned it to my Dr and she said its quite normal; It scared me!
Thanks for being so open amd honest, it really does help.
My GP gave me steroids while I was waiting for my first rheumy appointment and warned me about possible mood changes which was really helpful. I was one of the lucky ones who feel great on them; when I said that to my rheumy, she pointed out that I might need to prepared to get a mood dip when I came off them. It was really useful to be forewarned.
Marionfromhappydays also remember this forum was built because people do have issues with RA and everything that goes with it, so don't feel it is wrong to say I feel sad, angry in pain etc. NRAS and this forum would not be here if we could pop a pill and just back into the swing of things. However many can but many of the forum are ones who are struggling with the changes the RA has done to their health and work and life so be kind to yourself too.
A year ago if you had told me I would be crippled with constant fatigue, struggle to work even a 5hr day and pain constantly causing issues I would have laughed.
I think its a good thing to get things out and be honest about things, really apprecaite this place existing so we can vent and people can understand what we go through.
If I hear from one more time from my friends " oh my dad has that in his knee" I will burst. I love them but they just don't understand !
Give yourself time for the news to sink in. It is a shock for sure but as you read up (I recommend the national Rheumatoid Arthritis Society) and time passes you come to accept it.
You can always ask your gp for counselling if you need to talk to a professional. Then there's this group here where you can come anytime. Big hugs
Everyone has said it all. Ill just say welcome to the forum. Not the one you want to belong to, but really its such a help. Remember most people on hear have issues that they want to discuss, there are very many people who are in remission and not on here. Thankfully there are people further along the road of experience who are kind enough to share their knowledge and enourage us.
Take care, be kind to yourself, be informed but forget most of Dr google info its enough to scare the pants off you. NRAS booklets are great.
Ask any questions you like here and with your rheumy, no question is silly or stupid, be assured someone will already have asked it and got the answer to their question.xxx
It’s a bit of a shock to get your head round isn’t it. I was fast tracked to rheumatology so I wasn’t in absolute agony nor did I have deformed joints of have to fight too hard for my treatment.
I developed steroid induced T2 diabetes from the steroids I was prescribed for the arthritis
Then in January this year I broke my wrist, had a dexa scan and was told I have osteoporosis which was an awful shock even though I have a strong family history of it, had an overactive thyroid which is linked to osteoporosis and had taken steroids for the inflammatory arthritis - that diagnosis was much worse than the inflammatory arthritis diagnosis for me.
So at the moment osteoporosis is my big worry, then the thought that I could end up with T2 diabetes again if I don’t control my diet - they come way ahead of my inflammatory arthritis - that’s at the moment though.
All I can say is that who have thought growing old could be such fun - not!
Good luck with your diagnosis. I suppose I just tell myself that there are lots of other people out there who have a lot worse conditions than I have and be thankful I’m not them.
I think you are very wise to looking at your lifestyle. My Pilates teacher had said a couple of times what with my thyroid history - I am in remission from Graves Disease - I ought to have gone for a DEXA scan but I didn’t do it. Mainly because it’s sometimes hard to get your GP to send you for that sort of thing if it isn’t obvious and I don’t look as if I have osteoporosis so I didn’t bother. Silly me, if I had I might have caught it while it was still osteopenia and I would have been able to work on it before I reached this stage.
For a long time I felt let down and very miffed that No one even suggested having a scan when I was being treated by endocrinology and also by rheumatology- both conditions can be linked to osteoporosis but no one mentioned the link - as I’m typing this I realise that I’ve got over feeling like that, what’s happened has happened.
So, I think your decision to look at your lifestyle is a very good idea and all the best for your future.
I was diagnosed in early March this year and so far in my case disease has been particularly aggressive I went from walking in Austria in January to limited mobility at the moment
Unfortunately I think we all have to go through a process similar to grieving and the emotions are the same - sadness, loss,anger, frustration etc.
Hang in there because I am beginning to feel a little bit more like my old self and I am sure you will too although I need to understand how to manage myself versus disease a bit better but I guess that is another learning curve😳
Stay hopeful, Piwacket. I went hiking in the Dolomites, Donegel and the Scottish Borders the the months before the RA began. Five months on from then, I was so disabled I could not get out of bed or stand up from a chair unaided. My husband had to wash and dress me and half carry me up and down stairs. Six months on from that time, we did some hiking in Germany. OK, it was flat heathland rather than mountains, so a bit tame, but it was a start. We were all set to go to Austria and later to the Dolomites for some "proper" hiking this year, but covid-19 has put the lid on that. I feel sure you will also return to hiking. Let's both hope for the opportunity next year.
Thank you - it is good to know how other people improve - like you I have been very disabled recently but just started a biologic so definitely hoping for better times.
so pleased you are getting back to your hiking what a shame COVID put stop to your trip this year.
Yes let’s hope for better things next year
We are just planning a trip to outer Hebrides next May for , hopefully, some gentle walking 🤞🤞
Hi Marion from Happy Days, will try again. I woke up one morning and couldn't move I was in excruciating pain. I could not stand, sit, turn anything. I felt like my whole body was on fire from deep inside. My husband had to carry me to the bathroom. I was terrified of being left alone so my husband had to take 6 months off work. Over the years I have thought about the many different medications I take in order to function.
If I have to take these medications in order to never feel that level of debilitating pain again then so be it.
I fought for appointments, I am now not afraid to question my Health Team regarding any aspect of my treatment. You have to remember it is YOUR body YOUR treatment. Doing this helps you to gain back some of the control.
If one consultant does not suit me I do not accept them, I make the appointments on my terms to a hospital that is closest to me.
I use the support of my family, and of NRAS especially the book they did for family and friends regarding arthritis. I sobbed when I read this because my first thought was they are talking about me! Somebody understands!
I do not look at not being able to do something, I just have to do it differently in a way that suits me, no matter what anyone else thinks.
I did the usual questioning why me, well why not me?
I still have pain but I don't take painkillers.
My hobbies such as writing and singing in a choir keep me going. Our virtual choir did You Raise Me Up on you tube and it has had over 60,000 views that gives me a buzz
I hope you don't mind the long post here's a poem I wrote sometime ago after my diagnosis.
RA & ME
Fingers of pain grab my body each day,
Fingers of pain that I try to push away,
RA thinks it has me, but I think not,
As I'll fight it and fight it with all that I've got!
Everyday there's a new challenge to beat,
I'll fight it head on, each challenge I meet.
I can be down, but broken? No way!
For each sun that dawns is a brand new day.
I choose to show interest in each new day,
I won't let this condition stand in my way.
I choose to show interest in others and my life as me,
Oh so sorry you have RA, I remember when I was diagnosed, I went to hospital on my own thinking I didn’t have it, that it would be something else. So a real shock when I was given the results, mine showed up in scans not a blood test. I drove home in a daze and then cried. I have come to terms with it, I try my best to not let it rule my life, but have to admit sometimes it’s hard. I don’t tell many people I have it because the reply is always the same ( oh yes my granny had it) no she didn’t that was Arthritis not Rheumatoid. I think it’s frame of mind really, the drugs are not nice but what can we do. Just read as much as you can, ask questions when you see your RA nurse. Also goos support from family & friends. I do hope you feel better about it soon, but there are a lot of us out there. Good luck & once drugs kick in you will begin to feel much better.
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