Thoughts please

At the moment I am experiencing problems with my shoulders and elbows, no ems but burning sensation in the joints and pain which ebbs and flows causing problems when I try and do anything. It does tend to improve during the day as I do more. Saw my rhuematology nurse recently (while I have had these symptoms) she looked at my blood results and told me that my ra is under control. I get so frustrated my gp puts it down to my ra and the nurse says not. I feel like I am stuck in a limbo. Any thoughts would be much appreciated.

I was diagnosed with seronegative ra just over 2 years ago and am on a combination of 3 dmards, which are mostly keeping the symptoms under control

12 Replies

  • Sounds like you could of got better advice from your bus driver than your rheumy nurse...... Just because your bloods look good, does not mean your RA is controlled.

    I kept getting "oh you're RA is mild" from my 1st rheumy as my RA continued to snowball. Each time I saw him, I would have one or two new swollen joints added on to the previous 6 swollen joints..... Anyways, I digress, can you get another rheumy? Getting another rheumatolagist was the best thing I did to control my RA.

  • I'm seronegative and failed 3 dmards and am on a bio called Benepali along with 20mgs off mtx and have had RA since 2014 and I'm still not controlled properly and my bloods have always been normal, they tried that with me the first year but got wise to them and just told my Rheumy that if I was controlled I wouldn't waste her time and mine being there

  • suzannedale is absolutely right. Just because your blood tests say one thing, if your body is telling you different, stick to your guns. You know your body better than anyone

    Beverley (NRAS Helpline)

  • I get a lot of pain in my shoulders (not so much elbows). My bloods were OK last time, but I have just had them done today. So it will be interesting to see results. I quite expect them to be fine, but like you I have pain regardless!

    I've had rotator cuff tears, and was given dots right into shoulder. This did nothing other than giving me a massive bruise.

    Don't know what to suggest, other than get on to rheumatology.

    Hope things improve soon.

  • Oooh. Poor you. I tore a rotator cuff messing about on a climbing frame with a grandchild. It blooming hurts doesn't it

  • Yup. I get in in both shoulders, also get tendinitis, bursitis. Hey ho, could be worse!

  • Really?

  • Sorry for that. I blame the "foot in mouth" disease

  • Really what Buttonhater?

  • Really could be worse?

  • Thank you everyone for sharing your thoughts with me. Sometimes it feels like you are alone and no one understands, but it is not the case here. I am going to look at my options and see what I can do. I know my body and what is normal and what is not.

  • I was having a lot of pain in my shoulders and middle of the chest at the back. It was stopping me walking any distance at the time and preventing me from doing lots of things. It didn't seem related to the amount of pain and swelling that I had in my other joints, nor to the costochondritis that I also get sometimes. After much investigation, I have found that it was due to my posture (which I thought was OK) and now I know how to correct this it is much better. Sometimes it's the simple things that go wrong!

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