Can you have RA for 7 years without any joint damage?

Posted , 5 users are following.

Hello everyone.  I am new to your site.  I have a question.  I was diagnosed with RA about 7 years ago.  I was put on the standard medications and biologics.  About a year ago I moved and now live in Arkansas.  I saw a new rheumatologist and he says that all of the pain I am feeling now is related to fibromyalgia, not RA.  He doesn't think my RA is active and is in remission.  Therefore he won't put me on Enbrel.

My question is, can you have RA for 7 years and not have any damage to your joints? I have had xrays of my feet and hands and it doesn't show any RA.  I feel the same as I have felt for years and Enbrel was the only thing that helped me.  I am wondering if I should get a second opinion or if my pain really is all from fibromyalgia right now.  The pain is awful and almost unbearable even with pain meds.  Thanks in advance for your help.

0 likes, 9 replies

9 Replies

  • Posted

    Not an expert - but as I understand it you won't have joint damage if your medication is right, that is the whole point of DMARDs being used as soon as possible, to avoid the damage.

    I don't have RA, I have PMR (RA without the joint damage to all intents and purposes) but many of our patients meet this attitude from rheumies: I can't see symptoms therefore it must be fibromyalgia. And of course it gets them out of doing much.

    I wouldn't be seeking just a second opinion - I'd be actively interviewing for a new rheumy! If Enbrel kept you pain-free and stopping Enbrel has resulted in a return of pain - it seems reasonable that you need Enbrel to remain pain-free. The logical step would be to try it again - but of course having stopped it you have to hope it still works for you.

    • Posted

      Thank you Eileen!  That is exactly what I thought too but just wanted to hear it from someone else.  When I said second opinion, I actually meant seeing another rheumy, sorry for the confusion.  I'm not saying that I might not have fibro but I know my body and I know what I am feeling now is what I felt before when I was put on Enbrel.  For some reason, some doctors don't want to admit that we know our bodies better than they do.

      Also, I have been having extremely severe lower back pain and if I lay on the right side of my back at night, I wake up with my whole thigh completely numb. I even used a pin to my leg and couldn't feel a thing.  I can still walk when it's numb but it scares me.  I'm afraid I have a problem with a discor nerves or something and he just shrugged it off and said a lot of people have disc problems.  He wouldn't prescribe an MRI.  I am definitely going to see my primary care doctor about my back.

    • Posted

      Have you heard of Bowen therapy? Sometimes it is known as Bowtech or something else in the US I was told today on another forum (so let's blame pred brain, I can't remember what it is!). You might find that would help the low back pain - no doctors required, very gentle and uplifting, even if it doesn't get rid of all the pain it is worth it. You will know after a maximum of 3 sessions if it will make a difference, many people see an improvement after 1 session.

      And that rheumy should come with a health warning; "This is not a healthCARE provider". 

    • Posted

      I've not heard of it before but I will absolutely check it out.  And I agree with you about the rheumy.  He threw me off track my first visit because he was very nice and personable but the second visit left me with red flags in my mind.  Thank you so much for your help!
    • Posted

      Your back pain may be unrelated to RA, thr numbness sounds like neural impingement (not that I am a doctor but I have had discogenic back issues for 15 years), you should definately get an MRI for an accurate diagnosis, MRI is the best diagnostic tool for this . You can do allot of conservative treatments which help but not without knowing exactly what it is and where it is located. Hope that helps, I feel your pain!!!
  • Posted

    EileenH has pretty much said it all. But I will add one thing that searches on the internet show clear diagnostic signs for both RA and fibro ( still accepting though that individuals vary and can have both) RA is swollen/ tender joints whereas fibro is particular pain areas. I agree with Eileen that if enbrel was controlling the disease then joint damage was controlled. Anyone out there had a confused RA/ fibro diagnosis? 
    • Posted

      Thanks Rowbirdie.  I have had swollen and tender joints, especially my hands and feet.  Still didn't make any difference to this doctor as he didn't see it at the time I went to him. It seemed like every time I mentioned something, he always had a quick reply and knocked it down. It appears he has his heart set on me having fibro.  I have called my primary care doctor to get a referral for another rheumy.  Just waiting for a call back.
    • Posted

      I find this discussion very helpful. I have been seeing a Rheumy for a little while trying to get a diagnosis . I have all the signs of RA but only in both feet, specifically both third metarsals. No bone-damage in the feet though but I have had this firstly in the right foot for one year thrn the left started and now it is both, total of two years now. I have not heard of fibro, I have also been told it may be Freibergs disease but that is usually only in one third or second metarsal aarrgghh. One more MRI thrn a decision apparently. Also I have Osteopenia in thr hands but I have no symptoms so the doc thinks that's nothing but I have read it is early RA.
    • Posted

      This is from a general article:

      "Osteopenia and osteoporosis are very common in patients with RA.[30] The development of osteopenia in RA patients appears to occur independent of corticosteroid use and is directly linked to elevated levels of the receptor activator of nuclear factor-kappa B (RANK) ligand, which is expressed by T cells and promotes osteoclastic bone resorption.[30-32] Osteopenia in RA is directly associated with markers of inflammation.[32] The periarticular osteopenia that occurs in RA patients is likely related to high local levels of IL-1 and TNF-alpha, which are produced in inflamed RA synovium and which augment RANK ligand production.[33] IL-1 inhibitor anakinra, anti-TNF therapies, and the new RANK ligand inhibitor, denosumab, block IL-1, TNF-alpha, and RANK ligand, respectively, and have been demonstrated to improve RA-associated osteoporosis and joint space erosions"

      but both the Cleveland and Johns Hopkins sites also say intraarticular osteopenia is associated with RA. 

      I have to say, after 6 years of reading about PMR signs and symptoms which has included a LOT about fibro and RA as well as they can often be similar in presentation with a lot of overlaps - I have yet to come across anyone who suggests fibro as a confuser for RA! 

      Beware though of thinking everything will show up on MRI - it too has limitations. Muscular problems - unless it is damage - don't for a start. And often reading the MRI or CT results depends on what they are looking for. If they start with a fixed idea they can easily miss something else. I was told quite categorically that lower spinal pain was due to wear and tear and i'd have to live with it - which since I was not yet 60 and couldn't walk for more than a few minutes without excruciating back pain was not what I needed to hear. The mistake I made then was to believe the orthopod. When I finally ended up in hospital unable to move it was identified as sacroiliacitis that was being caused by spasmed muscles in my back, which was as a hard as a wooden floor. The physio I saw was flabbergasted and couldn't believe the doctor hadn't recognised a muscle problem. I won't say it is 100% - but I have no pain unless I'm daft and try to carry something too heavy on one shoulder, using a backpack is much better.

      I've worked in healthcare for a long time - I've rarely come across doctors who have more fixed ideas than some of the rheumies I've met! These days they also seem to match surgeons for social skills ;-)

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