My first month after being diagnosed with sero positive RA-- I'm beyond scared

I never thought of myself as an overly anxious or nervous person, but oh how that has changed. Although only recently being diagnosed and confirmed with a high anti-CCP, positive MRI for erosions, and clinical evaluation I'm quite certain that I've had this for at least the past two years. My RA started in my feet. I am a former elite athlete and saw countless Orthopedic doctors for one 'overuse' injury after another. We always chalked it up to sport. We went so far as having foot surgery on both feet 18 months ago. I say 'we' because I always trusted my doctors. My foot surgeon did not suspect RA even after I told him the reason I came to see him was severe pain on the balls of my feet that would have me limping to the toilet every morning. 6 months after the surgery I continued to have pain in my feet and per my doctors advice was given cortisone shots to help reduce swelling and it worked for about 4 months all the while the RA was wrecking havoc on my shoulders, hip and finally my hands. I woke up scared to death when I couldn't hold a cup of coffee, use the toilet or brush my hair. My GP sent me to a hand surgeon thinking it was again an issue with overuse. ( I was racing my bike in the Pyrenees for weeks on end ) When I suggested to the hand surgeon that I thought it might be RA he laughed a wicked laugh and turned the rest of the consultation into a psyche evaluation and lectured me on the "great need for us to embrace growing older" I left feeling utterly depressed and lost. It took another 3 weeks before I saw a Rheumatologist. When I got home after the diagnosis I cried. The following weeks I scoured the internet and only ended up more depressed and lost. I know it's really important to learn as much as possible about this disease ( especially when your experience with the doctors leaves you wondering how they missed what they did or left you feeling like it was all in your head) but doing all of that research has really made me crazy and scared, and unbelievably depressed. Just feeling really bad right now and wonder if anyone felt the same in the beginning and what helped you get through some of the hard stuff? Thank you!

41 Replies

  • Welcome to the forum Lucy. Yes it is scary for all of us as it's such a big thing to come to terms with. But I've now lived with RA for almost 40 years, much of that without drugs ie in remission, and I've survived, had 2 children and worked till I was 60. I had to give up skiing and squash and energetic sports but these days with more aggressive treatment and more effective drugs I understand that even that isn't necessary. So what helped...well taking control, looking at alternative and complementary therapies, diet, exercise, yoga, Pilates, mindfulness....and being determined to beat it!

  • I love your attitude Matilda. You give me hope :)

  • What helped me was downloading my annoyance and anger here! Then I started to pick up information on therapies and tips to help.

    I saw a counsellor as the shock of not " being me was hard and not accepting the diagnosis" abc it helped .

    I read the Nras website and used their helpline , sometimes twice a day when I didn't know who to talk to as I at that stage didn't want to burden my friends And family. And I went to s regional Nras meeting which was my turning point into feeling better .

    Good luck , hopefully you will get on RA meds and disease modifying drugs which will stop the erosions and help .

    Keep blogging in here too ! Axx

  • I really feel for you bless you.

    My story is very different as I started having issues just after my first son was born nearly 7 years ago and ironically it was my chiropractor who spotted a systemic issue and insisted I had blood tests by my go which sent me straight to a rheumatologist. I was lucky enough that my symptoms burned out after a few months but was warned my blood work showed RA was likely in my future. Fast forward through diagnosis of reactive arthritis into palindromic rheumatism to last June a diagnosis of full blown RA.

    Initially the relief of a diagnosis and the support and medications overweight anything else but frustration and anger at how much it impedes my daily life and the constant pain and trying to be 'ok' and carry on as normal pretty soon becomes exhausting and draining.

    Taking about it has helped, using sites like these to talk to people who understand and I have to say that the understanding of my friends and family and my two young boys are what helps me through.

    Arthritis UK, nras and any other support groups you can find are great. Nras have people you can speak to who may be in a similar situation and my local hospital does great workshops and conferences so I try to stick to these rather than googling!!

    I wish you all the very best and hope you get a rheumatologist who helps you. Take care and be kind to yourself xx

  • I remember that only too well! I scared myself witless with Dr Google, and practically ordered a wheelchair there and then. And cried a lot.

    I was never an elite athlete, and perhaps that makes it more difficult as you're used to your body performing. I'd had niggly grumbly joints for quite a long while, but then it started to escalate frighteningly fast. By the time I got to my first appointment with the rheumatologist I could barely walk - which was beyond frightening. Anyway, none of my worst fears have been realised, and 5 years later I'm doing fine. Not to your standard, but for me I'm fitter than I've ever been. It's quite amazing that I can now walks for miles on feet that could hardly shuffle to the toilet before.

    What helped? Sites like this, recognising that I'd faced tough things before and could do so again, learning about the disease from reputable sources like arthritis research and NRAS. Oh, and the drugs! They've been brilliant for me, and gave me back my life.

    I agree with Matilda7 that feeling some sort of sense of control is important, and knowing that you're doing your best to help yourself. So looking after yourself with good diet, sleep and gentle exercise. For me, I never embraced the idea that I would "beat this disease" as I feared that would make me feel permanently angry and frustrated. Instead I really tried to concentrate on living with it as best as I could, and keeping the best quality of life I could. So you adapt, and it's ok.

    Also, sites like these aren't that representative of life with RA as they do tend to be used more by people with problematic RA that is the most difficult to manage, so it does give a more gloomy view than is really the case. I rarely post anything as it would be pretty boring, just "I'm fine".

  • Love your posts. I always feel better after I read them.

  • Hiya Lucy, welcome to us here, it sounds as though you will find it helpful! You've done just what is recommended we don't do, search the internet, you're not alone but it's not helpful as you've discovered! My Consultant must have come across this many times as at my first appointment following diagnosis back in 2008 (seropositive) he presented me with a list of reliable & trustworthy sites to do my homework (where I was diagnosed patients are encouraged to be proactive & to learn all they can about their disease). It stood me in good stead, I learnt I was fortunate my GP recognised my symptoms (at that time just my feet & neck, referred me to a diagnostic clinic & was diagnosed within a month of symptoms. I revisit those sites regularly.

    Maybe it's my way but I was relieved to have a diagnosis & the pain could be addressed. Not that I ever wanted a chronic disease but if I had to have one at least there were things could be done & the pain would be relieved. No more waddling like a duck & crying in the street waiting for my h to get the car because I couldn't walk any further. That was probably my worst time & when I went to my GP.

    For me there's no doubt eating well helps me, limit processed foods & exercise (within my limits & recommended by my Rheumy & nurse). You may find asking about self help helpful, somehow being just that bit in charge of things makes coming to terms with having a chronic disease & needing meds a little easier.

    I hope being here will be helpful to you. All of us have been there, some had a long road to diagnosis too, it's not overly hard to recognise symptoms & diagnose so it beggars belief yours was missed for so long, unless similar symptoms are common with cyclists, not being sports orientated I wouldn't know but would like to think that was the case & not poor care.

    We're here to share experiences & support one another, feel free to rant & rage if it helps, we do & it helps to get it our there. :)

  • Hello Lucy, and welcome. I have had a similar experience to you... I was undiagnosed for at least a couple of years, not helped by the fact that I am sero-negative and also have hypermobility syndrome (also undiagnosed until a couple of years ago) and osteoarthritis. I was never an athlete, but I was active, and over the course of a few years I stopped being able to play 5-a-side football, then dance, then climb mountains, then walk... I had swelling in my joints and tendons, but not the classic 'sausage' or 'football' type swelling - more the general all-over type, though with a bursa behind my knee and some vascular or tendon nodules too. My hands and feet were really painful, and beginning to deform, so my hand function and mobility were badly affected. I hurt in so many places I stopped being able to tell where, and doctors either dismissed me entirely or offered me anti-depressants. Luckily for me, I moved house, and accidentally found a new GP who actually *listened* to me, and referred me to a rheumatologist and ortho surgeon. I had a hip replacement 4 months later (21 months ago) and was finally diagnosed with RA in October - so less than 4 months ago.

    My emotional reaction has been a bit different to yours, because my diagnosis came as a relief as well as a bereavement. I was so sure that I had some sort of inflammatory arthritis, despite my normal blood tests and most doctors' skepticism, that I kept pushing and pushing, until finally I got an ultrasound scan of my hands that showed synovitis and erosions. I was hugely relieved to be proved right, and to know that it wasn't 'all in my head'.

    Within days of diagnosis, I was given a depo injection of steroids and started on hydroxychloroquine. My NSAID dose was increased too. Within days - almost hours - my swelling started to subside, my bursa went, my hand function started to improve, and I got my pain back under control. :) The first 3-4 weeks, while the steroids were active, I felt like I was on holiday inside my own body, and that gave me an enormous boost of hope and confidence. Now 3-4 months on, I don't feel quite as good as then (the steroids have worn off!) but I feel better than I have done for about 4 years, and my pain levels have dropped by (I estimate) about 70%. I am no longer waking in pain at night, I can encircle my wrists with my fingers (they were too swollen before), my IBS has pretty much vanished, my eye inflammation seems to have gone... I understand that these symptoms may come back, and come and go, but I now have a sense that they can be controlled, rather than that I am on an out-of-control downward spiral, which is what I felt before.

    You asked what has helped...

    The thing that has helped me the most through the bad times is swimming and exercising in water - no doubt about it. Firstly, a lot of the pain goes in water. But also, just as importantly, I can do all sorts of things in the water that there is absolutely no way I could do on land; so as well as giving me that lovely endorphin rush that any exercise gives, I get the sense that my body is not completely useless, and that I can still push myself physically... That has been hugely important for my mental health as well as my physical health. :) I'm lucky enough to go to a pool where there is also a spa, so I also spend time in the sauna and warm spa pool 3-4 times a week.

    I have also given up refined sugar. I did it initially as a sponsored thing, but found it seemed to help, so I've kept it up. I've lost a bit of the weight I'd gained and feel generally better.

    A lot of people think Googling is unhelpful, but it has been good for me. I'm a natural 'researcher' and I want to know and understand what is going on with my body. It's true you find some scary stuff, but I have found that if you pick your sources carefully (academic studies rather than magazine articles, for instance) the info starts to balance out, and as you learn more, the scary stuff seems much less likely and less scary. At least, that's how it has worked for me...

    This forum has helped too. :) It's good to have people to talk to who understand and sympathise. I hope you stick around and find it helpful here too! :)

  • Thanks so much for this. I've re-read your reply as I have been more than a bit overwhelmed with it all. I feel beaten down and discouraged and know that this is of no help to me or anyone around me.

    I also felt great during the first month I was on Prednisone and when that holiday ended and the gremlins started showing up again I got scared and a little discouraged knowing full well that the stronger meds take time to start working.

    Your advice is priceless. I will make an effort to get to the pool even though what I really want to do is go for a run which isn't happening these days.

    Oh! I do hope you're right that all the research I've been doing will even out in the end. I'm sticking with the academic studies but with the blood markers I have the chance of landing on a positive research study is slim. I do find it ,though, on this site. People here have shown me that it's possible to get some relief with the right treatment and the caring and love that is shared by everyone is a godsend.

    Thank you for sharing your experience and help. It means a lot to me :)

    Big hug


  • I find my mood goes up and down, and I have days when I'm very discouraged. I find it helps to allow yourself those down times and not beat yourself up; after all, there IS a sort of grieving process you have to go through. I think that if you try and squish down the negative feelings, you can only do it by squishing ALL emotions, and you end up being a bit deadened to the good stuff in life as well as the bad. Better to do a bit of weeping now and again, I find, and then you get to enjoy the occasional laugh too! :)

    One thing to bear in mind when you read research is that treatment options are now much better than even just 5-10 years ago, and outcomes for people with RA are much better. Most of the research that talks about poorer life expectations for post-menopausal women focuses on women who were not treated - and you ARE being. The prognosis for those of us who are newly diagnosed is generally better than people diagnosed in the past...

  • Hi Lucy welcome to our site. Oh yes I remember being scared, confused, and overwhelmed. I too was ill for sometime before I was officially diagnosed. Two years on I feel alot more in control, knowledgeable and able to cope with what has happened, but it did take time. My advice to you is to reach out when you need to and ask any questions. Alot of people on here know so much and someone will have experienced what you are feeling or just post to say hello. You sound like a very strong women and I am sure you will be fine when you have got over the first feelings and you will see that alot of people do very well with the right treatment. II remember crying after my first appt and feeling low for quite a while after. I started to learn about RA the different drugs blood tests etc from this site which helped so much. Hope you feel better soon xx let us know how you are. Xx

  • I won't tell you my life with RA, over the last17 years, except to say that every one is different, meds that work for one may not for another. I started off with a GPtelling me that the pain I was having was age/wear and tear, but my mother had RA so I knew to pursue it. I've had different rheumys over the years, but two stand out who have been thoughtful and cautious in their treatment.

    They say that maintaining exercise and muscle tone is important, so it sounds as though you're starting in a good place. I hope you have good doctors who an get you going again but don't hesitate to share with us!

  • I sincerely thank all of you for replying and welcoming me to your forum! I hope you don't kick me out of your group as I live in Switzerland now. I'm an expat from the U.S, (only two years in Switzerland )and I have not found anywhere I can go to speak to people here. I don't speak Swiss German ( or high German very well, for that matter) In my experience the Swiss tend to keep things to themselves and work through hard issues privately. That doesn't work for me. I have found no hotline nor lectures at hospitals that help educate one on the complexities of this disease and even if I did it would most definitely be in German. My Rheumatologist did not suggest websites or places to do my research so it has been only via Dr. Google which is knocking me on my rear end. I'm nothing but determined to find a way to be as positive as possible and to find alternative ways to cope but it's been hard. The absolute worse for me is learning that this disease presents itself so differently in everyone and being told that my RA blood markers suggest a more severe form of the disease is hard to swallow. Being so new to all this I find when I hear that the medicine is working for someone I wonder if they are sero negative and therefore have different blood markers for a less severe form of the disease and one that responds well to drugs. Your group is the first one that made me feel like I found a place where I can speak freely and honestly without judgement. From the bottom of my heart I thank you.

  • It must feel isolating living somewhere you can't communicate fully; but in fact you might find you didn't really have anyone to talk to about this, even if you were home in the U.S. I think that's why many of us are here! I'm in the UK, and my friends are generally not good to talk to - they don't understand, or are bored by it, or worried by the things that are worrying me, which inevitably are the things I'd most like to talk about!

  • Thanks for this. I have just started the third month of living with this disease and find it really hard to explain to others what my day to day life entails now. You said it so well....'they don't understand or are bored by it' I don't want to bore people with my life, definitely not. I can't help but feel mostly alone right now. It's all a bit too much sometimes, isn't it?

  • Yes, it is. But hang on in there. You will eventually find people who get it and whom you can talk to, and meanwhile there's us :)

  • Hi Lucy there are people on the site from all over so don't worry xx I can appreciate how difficult it is for you. Just to try to put your mind at rest I am sero positive with a high anti ccp and rf. I worried about this at first but in some ways it helped as I had a clear diagnosis once I got to a rhuemy. I am now on Enbrel injections and hoping for good results which so far seem positive Xxx

  • Hi Lainee, thanks so much for this. I am really feeling alone and quite down. I'm trying to maintain some kind of normalcy but when I feel overwhelmed with fear I feel like a completely different person and I don't know who she is. Anyway, I really do appreciate your reply and it does make me feel better.

  • Hi Lucy the isolation and lack of people to talk to is often as bad as the RA. I totally understand and sometimes this is all we need to hear. You will get to know who you can reach out to even if it's just one person. The fear is real as you are just starting to understand this illness. I had really goid results with Embrel (before infection) so try to think you will get there. It is very early days for are the same person just facing a challenge x we are here for you Lucy xxx

  • Thanks so much for this Lainee. I really appreciate your reply. It's been really overwhelming as I don't yet understand why the disease jumps around so much. Everyday it seems to find it's way into a joint that felt ok the day before then subsides for a few days and comes back again. My jaw has been hurting now for the past two days as it has many times before and I really just want it all to stop. I'm so afraid that my husband is going to have to take care of me and I won't be able to contribute as I have before. I've been keeping this all in as I don't have anyone to talk to here. My family and friends are in the states and have their own busy lives to live and I definitely don't want to burden them with something I don't even completely understand yet. It's been a very tough week

  • Keep positive were all here to help you xx

  • Hi Lucy I can remember it hitting my jaw ouch! As far as someone looking after you try to remember you may need help in the short term and during bad times but wouldn't you do the same for your hubby and would you mind? I know it is humiliating asking for help but you will work out ways to make it easier when you need to. Although you can't imagine it now one of the treatments will work for you. I very much share your fears over high anti cpp but I now try to put it aside as I can't do anything about it. There is one thing I know makes it worse and that is anxiety and stress. So what can I say to make you feel better. Try to take one day at a time Just concentrate on achieving little things. Try not to rule people who care about you out ie family. If they are miles away they can't see you so can't imagine how you are. Where are you now with meds and treatment? I didn't believe anything would work but with the help of a good team I have alot of hope. Take care and hope you have a better day, remember it's early days xxx

  • Kudos to everything you said. And thank you!

    Big hug


  • There are at least two people from Switzerland here, plus others from France, U.S., Holland, India, etc etc - we don't have border controls here. So be welcome.

    From my experience over last 5 years of the people on this site the sero-positive/seeo-negative issue is not as clear cut as some of the literature makes out. I'm RF negative, but strongly anti-CCP positive and I'm doing fine whilst some of the people here with huge problems are completely sero-negative. Things have changed a lot with the newer drugs, so much more it seems to hinge on your ability to cope with the drugs and find a combinatIon that works for you. Which is where the looking after yourself comes in, as keeping a good metabolism with sleep, diet and exercise I think really helps.

    But try not to anticipate problems, you've been diagnosed now and there are loads of different drugs so one of them will work for you. It just all takes time, but believe that you'll get there.

  • Thanks for this. Indeed, I need to work on not anticipating problems and maintaining as normal a life as possible. I'm trying to do the same things I have done before just a little more dialed in. Sport was a big aspect of my life but on the extreme end of endurance events so now I'm learning to be a little more prudent at least during the initial phase of finding a combination of drugs that work for me. A million thanks for the reminder that I must believe that one of the drugs will work-- I really believe that is key along with looking after myself with sleep, diet and exercise...a little humor wouldn't hurt either, eh?

  • Now you are getting positive...thinking about jokes already!

    Also meant to say that I used to be an over-stressed, impatient, hyper person and now I'm calm, patient, & positively serene - so you might be surprised what RA gives you. It's not all awful.

  • Hi,

    I got diagnosed 2 years ago by a doctor with no bedside manner. She pointed at blood test result (strong positive anti-ccp) and said "Now we know". Then she gives me pamphlets about various drugs and tells me to visit some websites and do research. I get to a computer and Google Anti CCP. First hit is an article about short life expectancy for post menopausal woman with elevated anti CCP!!! I though I was counting my last days. It was torture. The more research I did, the more dire it looked. I went back to that doctor a few more times and then found one who communicates better. It made all the difference in my outlook. Hang in there and meditate, exercise, LIVE!!!! Do not let this weigh you down. I live in Florida and feel very welcomed by everyone on here :)

  • Hi Onslow-I only just saw your reply. Thanks so much for this! It seems that I must have read the same article as you about the life expectancy of those of us with high anti CCP and it really thew me for a loop. Well, that and the fact that it indicates a more aggressive, severe form of the disease. Have you found others that are living mostly well for a longish period of time with the same diagnosis as ours? I know we are all different but everything I read is so discouraging and I have to do all of my own research as the nurses where I go don't speak English very well and although I'm happy with my doctor he doesn't have a lot of time to talk. I'm still new to all this and I'm not doing so well at the moment. Thanks again for the reply and I hope you are doing very well with your treatment and with life!

  • Hi Lucy,

    I did a lot of research. Too much!!! Was losing my mind. Worrying about the future. How I would be a burden on my husband, etc. I spoke to a few doctors and found out that there are so many forms of this disease. There are mild versions even for those of us with anti-CCP. Consider that a marker, not a guarantee of dire consequences.

    Live everyday and be thankful. I lost about 12 months worrying. Drove myself crazy. Eventually I just stopped reading, researching, etc. Kept my doctor Appts and started living again.

    Best of luck to you and keep me posted on your situation.

    Warm regards,


  • Hi Amy,

    Thanks again for the reply! I'm now in my third month and I can't quite shake the need to research but I do appreciate that it really is a double edge sword. Right now it only makes me feel worse. I also don't want to become a burden on my family. I'm mostly alone these days and that is a 360 degree switch for me. My family are all in the states and they have their own busy lives to live. The few friends that I have made here in Switzerland were all into racing bikes and triathlon as was I and it was not a tight bond like the ones I had back in the states. Feeling quite alone at the moment so I really appreciate your advice--I'll just keep trying to keep on keeping on. And thank you.

  • Hello,

    Try to have things to look forward to. Even small things. It helps me to redirect my thoughts.

    I'm here if you need a friend :)

    Greetings from Florida,


  • Thank you so much! I could use a friend :)

    I'll make an effort to get some plans sorted out to do something fun and take my mind off it all.

    Have a great day!


  • Hello Lucy. I think you have had a lot of very good responses to your post and there is not a lot I can add, except that there is hope and the vast majority of people are helped by today's medicines. I was diagnosed in 2009 and like you was absolutely helpless to start with. Now in my second year of remission. I am Swiss living in the UK for over 30 years, but I really feel for you being in Switzerland. They are very different from most of the other Europeans. So welcome here and I'm sure the British helplines are open to you as well. All the very best.

  • Thank you!-- there have been many nights that I wanted to run back to the U.S just to talk to some of my friends and family. I use to even chit chat with strangers on the subway and always felt a sense of belonging. It was home. Here, in Switzerland it's been a bit more difficult for me to make friends. I cannot go back now as my insurance and my work are here but I do have a good cry every now and then ever since I learned I had this disease and wish I was back home. This too shall pass--it's just a bugger isn't it?

  • 'Tis a bugger indeed. All the unknowns plus the language and culture barriers, I really feel for you. But by now you know you are not alone. As you said, it'll pass and make you stronger. Big hugs.

  • Hi Lucy and welcome to this forum. I think the comments posted so far speak for the many more of us who have also read this post. All that is left for me to say is good luck with this new challenge in your life. I too am a keen sportsman (although not elite) and I have found that the skills I have learnt in sport are helping me to deal with having RA. I will not stop my passion for sport as I will continue to find ways to take part in sport irrespective of my condition.

  • Yes it is scarry, the drs at the surgery, I went through 3, would no listen to me when I said I was fine before, they just said it was my weight, then I found the 4th did believe me and did blood tests for me and it got me on the RA wheel. I feel so sorry for all you younger people I am 70 and have only recently had real problems but when I think back over my life I must have had RA and PsA but not too bad. So I am lucky my thoughts go out to you all with loads of hugs this forum is the best you can see other people suffer as much if not more than you, take care and listen to your body xxx

  • Hi Lucy , don't despair, I am newly diagnosed,six months in and on a shedload of meds,but, I have to admit I feel a whole lot better than I did, I to read all the stuff about RA online and major freaked out !!! You just have to take one day at a time,an old cliche but very true,and eat well and be kind to yourself,if you need to rest do it,that was a big mistake I made thinking I was superwoman and could carry on as I had been, this site has been pretty amazing with all the knowledge and love there is here, just remember you are not alone and things will be OK. , big hugs xx

  • When I was diagnosed aged 36 (65 now) I wasn't scared, not even too worried - oh foolish child that I was. Now, almost 30 years later, with lung disease, Osteoporosis, Vasculitis, Sjogren's Syndrome, hypertension, breast cancer (in remission) and a few minor things I've forgotten about, I'm terrified. I sympathize with you and wish you well for the journey you have ahead. xx

  • I hate to welcome you to this RA site Lucy11...I would of loved to welcome you to a site dedicated to Lottery winners...but alsa here we are, it is what it is....I remember the fear when I was first diagnosed. The only advice I can offer is to take a deep breath and to trust your Rheumatologist. Follow his/her advice, for they are the experts. They can lead you to remission.

    I wish you well


  • Thank you!

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