Not sure if I actually have RA

Hi, I have been reading all of your posts and learning a lot, but I'm not sure if I have RA yet.

I'm 54, with lifelong severe asthma and I have been having joint problems for quite some time, getting worse over the past year. I've been unable to walk properly since early May - very lame and slow. The pain in my feet is my worst problem, closely followed by hands, jaws, then elbows. My morning stiffness seems to go on for the whole day. I couldn't get downstairs in the morning so have moved my bedroom to ground level. My hands and feet look puffy but not hugely swollen.

I am exhausted all the time and have had to take a lot of sick time this past few months. I'm terrified that I'm going to lose my job.

My gp thinks I have sero negative rheumatoid arthritis and referred me to a rheumatologist a couple of months ago, but I have not yet received an appointment through. In the meantime I am managing on celebrex and co-codamol, and have had a short course of steroids.

I really don't know if I want the rheumatologist to agree with my gp or not. On the one hand, there would be a definitive diagnosis and hopefully some treatment that might help. On the other, RA is a diagnosis that would really frighten me.

I wonder if anyone wanted to share what their first symptoms were?

Sending much love and healing thoughts.

22 Replies

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  • Hi there. I totally understand your fears but don't bury your head in the sand. It might be worth considering that many of us here will be those who are having flare ups or whose disease is difficult to get under control. There must be many thousands of RA sufferers and those with other forms of inflammatory arthritis whose disease is controlled to the extent that they don't feel the need to post or even belong to an online forum.

    Not sure what my excuse for hanging around is, I suppose I'm just an interfering busy-body most of the time because my psoriatic arthritis, though severe at the time of diagnosis, has generally responded very well indeed to treatment. I'm not a particularly courageous type but to be honest I was too ill even to feel frightened back in the day. I'd got to the point where I just wanted drugs that would help and that says something because before that I'd agonise over whether to take a couple of paracetamol for a headache.

    I think you're right to come here 'cos I'm sure you'll get lots of support while waiting for that appointment. And maybe if you do have RA or another form of inflammatory arthritis it'll be caught soon enough to prevent any damage ... and then there's every reason to hope you'd get treatment that will help big time. I hope so.

    How did my disease first show itself? Intermittment stiffness over the years, then worsening fatigue .... I left it far too long to seek help. My knees were very swollen by the time I was referred to rheumatology but I reckon the PsA had taken quite a hold by then.

  • Postle, your second paragraph could have been written by myself.

    I was too ill to be anything but grateful for any of the treatments. There is no pretending things will go away and as many Specialists attest there is no such thing as mild RA .

    For me it was pretending my two little achy fingers on my left hand were nothing for too long that got me into the state I was in when I experienced what was described as explosive Polyarthritis in July 2015.

    Lyon, I send you my very best and if I were you I would chase up that referral to the Rheumatologist.

    Sounds like your inflammation is roaring away and no one should let inflammation run rampant without treatment for multiple reasons not just pain.

    As others have said, please don't be scared just get informed and you will get the relief you need hopefully soon and on this forum the support and personal experience to help you.

    Mx

  • Your symptoms describe my symptoms to a tee!!

    I too remember the gut sinking feeling I had when I heard my diagnosis... I agree with Postle2, don't bury your head in the sand. There are treatments that can help.

  • Hi Lyonheart, I do feel for you. It does sound as if you are in the first stages of RA. I am seronegative and possibly now have a Psa diagnosis and it started with foot pain, neck, elbows and shoulders along with horrible fatigue, headaches nausea and fever.

    I was put on MXT NSAIDs right away and now two years later I feel almost normal. I am lucky. Once you have seen a rheumatologist he should get you on a treatment path. Good luck, I'm sure things will get better.

  • Whatever the diagnosis turns out to be it's important that you get treatment ASAP . If your symptoms are so bad that you've had to move bedrooms I think you should be hassling for an immediate Rheum appointment. The diagnosis of RA is hard to get your head round but actually, many of us, myself includdd, turn out to be the very lucky once once treatment is started. I was diagnosed 11 years ago & initially did very well just on NSAIDs . A few years in and MTX was added after a flare. This went so well that i was officially in remission for years until a flare about a year ago. Treatment switched & again responded.

    It's not all doom & gloom. Treat the medical professionals with "sceptical trust" . And believe that at some point you will wear heels again even if you are never without flats. Unless you're a guy, in which case heels are never a good look. 😉

  • Hmmm - I dunno - I worked in San Francisco for 8 years and there were some guys that that looked stunning in heels... ha ha

  • Thank you all for your responses. I laughed at the heels comment, I have so many pairs of lovely shoes I haven't been able to wear for about 6 months. I'm down to two pairs of wide fitting flats lol

  • Once you actually start treatment, you will get better most like in the feet too. It took me about a year of wearing Crocs for everything because of the large toe box, but now I can wear everything but heels or wedges... Not a big loss for me at this point - ;-)

  • Hi

    I feel the same as you, do I have RA? I was diagnosed with sero negative RA in May 15, I refused to believe I had it, I was in complete denial as I'm 54 and thought .. really ! Pain got so bad my Gp told me if I don't take the drugs I'm going to be in trouble, so I started on sulfazalasine which wiped my blood count out and I was nearly hospitalised, I had depo-medrone injections which eased but what a come down when they wear off :(

    I had 8 x tablets of methotrexate but pain continued along with severe mouth ulcers, after several months lots of time away from work which caused me so much stress I am now on 15mg of methotrexate which I self inject, I do feel better and stiffness has decreased, swelling and inflammation have reduced too, I feel "better" but I have another issue with passing watery blood in loose stools, this has only happened once but there is confusion over RA and colitis, so more investigations.

    I did do a 2 mile walk yesterday and pain in right knee is bad but feet are ok so all good.

    Keep positive and keep asking questions, I do, I'm back at the gym and swimming again, There are people much worse than me and a lot younger too so I count myself lucky.

    Good luck xxx

  • I know the feeling, but don't expect an immediate answer from consultant, I went yesterday and because I was not in pain / swelling he would not do anything. (I understand why not but also want to know if it is or isn't ra, if it is I want treatment). I was on steroids for 2 months and felt great no pain no swelling and no clicking joints, and my nails actually started to grow came off them and felt like hell. had more pain in different areas to before and sleep, well when do you wake up!!!! so now I am going to start taking Turmeric and Ginger in the hope that this may help having mri on hand and have to wait to see what that shows. - oh well I suppose another xmas being ill.

  • Hi I agree with your fears I was the same I even started to get,very scared as I seemed to have pain everywhere I could not sleep spent many nights watching television and dozing on the sofa I had steroids for almost a year but the relief when you get a diagnoses and I was very grateful as the medication has worked for me and I have been able to get on with my life since Feb I am thinking of you cx

  • Hello Lyonheart,

    I was diagnosed with inflammatory arthritis this time last year. I had always been really stiff in the mornings, varying from practically crawling to the loo to shuffling because I couldn't get my feet up off the floor. Then last year I found I had to buy plug adapters as I wasn't able to get enough grip to pull a plug out of a socket. I couldn't hold things like bowls in the kitchen, couldn't push the vacuum cleaner etc plus the base of both thumbs hurt as did the fingers in my hands. The GP I saw was amazing and fast tracked me right away - after he had said 'Does this hurt?' And squeezed my hand in a handshake. I also had what I thought of as fibrositis or myalgia - deep burning pains in my neck and down into my shoulders.

    I was put on a course of steroids as soon as I saw the rheumy and was told if they helped I would start hydroxychloroquine. Did it help. I was like Wonder Woman after a few days on the steroids! I started the hydroxy and most of the problems I was having have gone, I get the odd twinge and gel a bit more creaky in cold damp weather but absolutely nothing like I was before and the horrible burning pain in my shoulders has gone thank goodness. That was very hard for me.

    I think arthritis creeps up on you and you get used to it, or that was how it was for me. I just got used to not being able to move well in the morning and planned for it. It was amazing to start the steroids and realise that I didn't hurt, just amazing. Did your steroids help you?

    I wouldn't be afraid of it, if the rheumy agrees with your GP then you have it whether it has a name or not, better to know what it is and be treated and hopefully be pain free. I remember saying to my GP that I didn't have deforested fingers and he said that with early intervention and treatment there was no need for that to happen.

    I consider myself to have been really lucky to have found a doctor who knew what he was dealing with and who was progressive enough to know that I needn't just accept that things like that happened to older people. I'm sixty seven. I'm sero negative too.

    So good luck, with a bit of luck and a decent rheumy you can be shooting up and down your stairs in no time.

    Oh and I was exhausted all the time. That's gone too.

  • Hi,

    I too had a seri negative diagnosis,but because my consultants appointments always seemed to happen on my 'good days' and was never inflamed,I decided to start keeping a picture diary. We all have cameras on our phones nowadays,so I decided to use mine for something useful,instead of just pics of the cats!! I now have an album that has about 1000 pics in it,just so I could show the relevant people that even though my bloods don't show up as inflamed,my legs and rest of joints were so inflamed I looked twice my size - it did the trick,and I found I got listened to more than before. Even now,just 10 months into talking enbrel, when I look back at the pictures I can't believe it's me,it's amazing how the right course of treatment can work wonders for you. I was only 40 when my symptoms started very aggressively,so was terrified about my future,and it's been a very hard and long 3 years since my symptoms first started to the point now where I can finally see a light at the end of the tunnel. Fingers crossed that now you're aware of your symptoms you can start to move forward in a positive way.... it will happen,and there will probably be a few false starts along the way,but keep strong,and remember that you will get there eventually - life is far from over yet x

  • Good idea - I thought my phone was only for pictures of the cat - ha ha

  • I have been taking pics from the start. It definitely helps when trying to explain your symptoms. I take "normal" shots for reference. I also keep a journal. I jot down everything no matter how simple or insignificant that way I can keep track of things that come and go

  • On my first real flare up of RA I d had a few swellings pains in hands feet shoulders etc then one day I woke was unable to move the pain was excruciating my husband and grandson helped me out of bed only to find I could not stand or move for swellings and pain it was a real struggle for them to get me to the loo then I could not pull pants down I was absolutely useless all I could do was cry with fear and pain my hubby called a doctor who said it was arthritis try keep me moving take pain killers so hubby dressed me then sat me in a patio chair in bedroom impossible to get me down stairs and I am not a big heavy women my I was up there five weeks like that getting no better saw four different GP s from surgery who all said arthritis they would not listen to me when I told them I'd been diagnosed with RA more than twenty years ago then a fifth doctor came he said RA as soon as he saw me gave me steroids which in two days enabled family to get me downstairs and brought a bed down into d/room where I stayed getting no better for another three weeks in the end I rang surgery myselfasked if doctor I normally see to visit me he came within a couple hours immediatly said its RA gave me a steroid injection went straight to surgery rand hospital RA unit I was in within four days to see consultant as soon as he saw state I was in he admitted me immediatly the hardest part of RA is getting a go who recognises it

  • I'm nearly a year in from my 1 st and thankfully only flare. I'm also feeling pretty well. I also have read so many posts about people's much more advanced disease that I still doubted my diagnosis ( DX) But then i read a post from someone who has nearly the same symptoms as me, who also doubted her DX and went off her meds. She quickly regretted it. One thing I've learned on here along with a lot of other great things is that RA is not the same for everyone. Thank you to the respondents to this post and so many others for helping everyone see through the fog of this disease

  • It would be really hard to say with any kind of certainty that you do or don't have RA just because the symptoms, while indicative of RA, can be a lot of other things too.

    I'm so sorry that you are in limbo. The truth is hard, but not knowing is worse I think. Sending you gentle hugs...

  • Hi I'm sero negative RA and also OA had it since 2014 and was in a right state was on 3 Dmards mtx 20mgs, sulfazalasine 4 a day and hydroxocloroquine which wasn't halting the disease, so I'm on a Bisomar now Benepali along with mtx but dropped the sulfazalasine and hydroxocloroquine and I'm reaping the benefits now go aqua aerobics 2 a week and also fitness classes 2 a week and have noticed a big difference, I still get niggles and a bit off fatigue but not the pain and fatigue that I suffered for 2 years. I would keep taking medication as there is light at the end off tunnel so keep chin up and keep fighting

  • Hey lionheart

    Take it one day at a time, try not to worry about the what ifs, because it could turn out to be a while load of stress for nothing. As others have said, we all have varying degrees of problems and you could be one of the lucky ones who responds well to treatment. In the meantime it's a lovely supportive place here where you are most very welcome 🦁♥ x

  • I got ra a little over a year ago it started in my pinky it was so swollen I couldn't bend it thought I had broke it somehow. Then my elbows started to hurt really bad so I went to the doctor and she sent me to a specialist. But where I live there is only one doctor that covers ra and it still only took me three months to get an appointment I would check into that. I don't want ra either cause you basically deal with pain and being over tired the rest of your life. I keep going on websites in hope I might find I have something else. I couldn't take any of the medicines they gave me, except for prednisone that helped and then last friday she put me on xeljanz which is working okay so far. But I also have high blood pressure so I can't take a lot of the medication that they give you for ra.

  • Thank you all for your stories, you're all inspirational and I wish you good health and happiness x

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