I don't know if I have RA or something else? - NRAS

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I don't know if I have RA or something else?

lin256 profile image
7 Replies

Hi, I've just found this site, and have been reading through the questions and blogs. It makes worrying reading and I hope, if I do have RA, that I can cope as well as you all seem to be doing.

in Sept last year I noticed my hands were a little stiff in the morning. It got gradually worse and I saw my GP in Oct when I couldn't bend my fingers fully until after I'd had a shower. I also had a few twinges of pain during the day. A blood test result was "non specific inflammation of the joints" and he told me to come back if the symptoms got worse. I returned in Dec, by which time I couldn't bend my fingers at all in the morning, my hands were noticeably swollen and the twinges of pain were becoming more frequent, but I saw a different GP, who told me that I don't have RA and "lots of things could cause these symptoms" I'm still waiting for an answer to my question about what these "lots of things" are! I was referred to a physiotherapist and told her that this was treating the symptoms and ignoring the cause, though I must admit that the exercises she set me did help with the stiffness during the day (hands were by now remaining slightly swollen and stiff most of the day, but not as badly as in the morning. The physio recommended I see a rheumatologist and I have an appointment in April. My hands remain stiff and swollen in the morning, improve after I've had my shower, but the stiffness and swelling doesn't ever go away completely. I still have twinges of pain in various joints mostly lasting just a few seconds to a few minutes, although I've had pain in my wrist which lasts all day - this is the only pain which makes me resort to painkillers - the rest is bearable. I also now have some twinges in my feet.

So is this the beginning of RA or is my GP correct and its something different entirely?

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lin256
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sylvi profile image
sylvi

Until you have had all the tests you won't know. My advice to you at this moment is not to worry until you find out for sure. They are signs of ra,but as one doctor said it could other related problems. See your gp and ask him to do blood tests specific to your problems and that will guide him on how to treat you.

Hope all goes well for you. sylvi.xx

I'm a bit shocked to be honest that your GP was so dismissive? I think this sounds like it could be classic RA to be honest and the only way to go is to get a diagnosis as soon as you can so you can start treatment. Of course I hope it's not but better to read up and think it might well be as GP obviously hasn't a clue so be firm and show you've read up - get NRAS leaflets and study the pages on this site it's brilliant.

I had more or less identical symptoms that started this time last year and came and went - maybe worse in knees than hands on and off to begin with but by the end of summer my hands were definitely the worst with swollen knuckles and fingers i couldn't bend or write or grip with. I saw a rheumy in July and he said "inconclusive" despite a low positive Rheumatoid Factor - and other blood tests were taken. Then when I saw him again in November I really knew what to look for and had photos of swollen hands and wrists for him and some of knees the odd instance they went red hot and swollen. On the basis of swollen hands and wrists he diagnosed me with sero negative RA but said to keep an open mind it might change.

So my advice is to keep a record of your symptoms and take photos of any swollen joints. Sometimes the bloods reveal positive r factor or anti-ccp but not always and you can still have RA without the bloods supporting this. It can be a very destructive disease so best to make sure that you have evidenced all the swelling and pain when you see the rheumy in April. Mine is on the wane now I'm on Methotrexate - and I feel almost back to normal apart from the side effects of the drug which isn't great but worth it to avoid joint damage. Best of luck! Tilda x

helixhelix profile image
helixhelix

Hi there,

Stiffness and twinges are possible signs of early rheumatoid arthritis, but there are other types of inflammatory arthritis that are marginally better - so the GP could have been referring to these, or even osteoarthritis.

Anyway it's great that you have an appt with a Rheumy soon. Quite often GPs won't do the more specific blood tests for RA, and you won't get anywhere close to a firm diagnosis until a rheumy has seen you. But the important thing to have in mind is that the earlier you can tackle this disease the better, and with about 20% of people that works brilliantly and they hardly have a twinge ever again. And lots of others reach a medically controlled remission where you're ok if you keep taking the drugs (which is where I'm still aiming for!) and it's a much smaller percentage who have the very aggressive type. So please don't worry yet, but do push & nag to get seen. And when you do have your diary ready as Tilda suggests, as if you don't tell them how it is, the doc won't know. Good luck. Polly

lin256 profile image
lin256

Thanks to you all for your replies I'll continue to keep an open mind, and, as suggested, a diary of my symptoms. Good idea too to take photos - I hadn't thought of that one. I'll let you all know how I get on.

Hiya,

I just want to add to what Polly says about an early diagnosis, my RA started pretty similiar to yours and at the time I never did much about it until I hit a flare all over, then I was treated very early and very aggresilvely, by the sounds of it and I really hope it's not! if you do have RA then like I was you're in the early stages.

The good news is that I went into medically induced remission and have been for 5 months (i was only diagnosed one year ago exactly).

I read an NRAS info on RA which explained that when it is caught so early then it is easier to control, with a higher chance of remission, they compared it to stopping a boulder running out of control down a hill, once the RA has taken control it's harder to control.

If you are diagnosed, please, take all the medication you can, the quicker they find something that works for you the better.

I was lucky in the sense that I was given 3 treatments at once rather than 1 at a time, scary at first but I'm so glad now as otherwise I would still be trying each one for a few months only for it not to work, then onto another (DMARD).

So by the 8 month of diagnosis my RA was under control...

Will look forward to hearing how you got on x

Kathy31jan profile image
Kathy31jan

Hi. I totally agree with what Wiliby has said, although i am one of the unlucky ones who got an agressive form of RA 15 years ago and wasn't given proper medication early enough so alot of damage was done.

I've been on triple therapy for 8 years - methotrexate, steriods and enbril - and it's made a huge difference, but my feet are very damaged from the early years of not having the right medication. My GP was treating me for water retention for several months until I saw a different GP who identified RA straight away!. The rheumatiologist I first saw was patronising so if you're not happy ask to see someone else. I was too bewildered by my unexpected symptoms to be my usual bolshy self!

I do hope its not RA but whatever it is please don't let time and pain drag on without medication. Medication is scary and no-one wants to take it but if they put you on high doses at first you can always reduce it to a level that works for you. If like me you start gently then damage can be done that's irreversible. Good luck. I hope it all goes well. Kathy :o)

SarahKate-NRAS profile image
SarahKate-NRAS

Hi lin256

It sounds as if you've had some very good advice from everyone here, but you may also find it useful to read our 'What is RA?' article: nras.org.uk/about_rheumatoi...

RA can be a difficult condition to diagnose. Many GP's unfortunately don't tend to know too much about RA, as they do not prescribe the medications, so referral to a specialist is the next step and only a rheumatologist would be able to make a firm diagnosis. It sounds as though you are on the right track with your up-coming rheumatology appointment, so I hope that goes well. It is likely they will run some blood tests, speak to you about the symptoms you have been having and do a full examination of your joints. We also have a number of articles on the blood tests used and what to expect from your first appointment with the specialist:

nras.org.uk/about_rheumatoi...

nras.org.uk/about_rheumatoi...

I hope it all goes well.

Kind regards

Sarah Kate

NRAS Helpline

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