Feeling neglected

As some of you know I was told after a few years of I've got R A I now don't have it, but now feel completely left high and dry because well it's only osteoarthritis, so the reason I'm writing this is my knees my hips my feet my hands are still hurting tingling in hands and legs, been given Amitriptyline co-codamol and feel that the doctor's think JOB DONE don't bother us again. And I don't trust them anymore having been told to have a thyriod blood test every 3 month for over a year I've just got a letter asking me to have a thryr blood test because they're records show I haven't had one for twelve months??

7 Replies

  • I would not blame the doctors: admin are responsible for entering test data. I can't tell from your profile whether you are based in the UK but here my on-line accessible data is incomplete, so that graphs for CRP and ESR do not show recent 'spikes' in an otherwise downward trend.

  • Hi Burlingham,

    There I was thinking I was the only one (almost) in the sero-negative inflammatory arthritis grouping. The last time I saw my rheumy, I mentioned the nodules developing in my fingers and she said, "Oh, that's arthritis. Everyone gets arthritis." And that was that.

    Without the RA factor in the blood, my services wont treat me as RA. I have symptoms in the morning, like difficulty moving my hands until exercised (RA), and the pain gets worse through the day (OA).

    As for the bloods and results generally, I find that if I make contact with them I can usually get the results ready. They do need pushing. I was supposed to have an appointment in three months - it's now 5 so I'll give them a nudge. I'm not to bothered about that, as I'm thinking they may not send reminders for those who have OA, as there's little that can be done for us, sad to say. It's just pain management.

    Sorry, not too helpful and really just saying that your experience is not unique. Having accepted the OA, I've decided to get on with it and to stop monitoring how I'm feeling and I'm not so disturbed with the pains now. They are still there - badly at times - but overall less of an interruption than before.

    Good luck with it!

  • Thanks for that. They put me on sulphasalazine ist and something else but allergic to both then they decided it was just OA.They did say I need both hips replacement but can cope with the pain so I am leaving it for now. Thanks again just good to know someone out there to use as a sounding board.

  • Thanks

  • It often can feel like you have been abandoned - but that happens whatever long term condition you have, I'm afraid. The demands on the service are so large, they do tend to concentrate on those who need urgent care understandably.

    But make sure that you are treated too. Don't feel that as it mainly OA (which may have come from inflammatory process earlier or be low grade) that you are any less deserving of consideration for good treatment to control the pain and stiffness.

  • Well said and I agree.

  • Thanks

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