not even diagnosed yet :/

bluebell
bluebell Member Posts: 25
edited 8. Mar 2016, 13:57 in Say Hello Archive
Hi All

feeling a bit silly posting tbh as not even diagnosed really yet, but I find myself reading up constantly (as you do) and have been lurking on the boards so thought I'd say hi :)

I won't bore everyone with a full life story but sufficed to say I've had a long history of pains in feet, hips plus other random joints (especially in the morning), but have only recently put it all together and been to a GP when a few months ago my hands/middle fingers became very painful and unable to move in the mornings.

just went to the doc in the last couple of weeks. blood test showed pretty much normal except for high ESR. he says it's probably an inflammatory arthritis, but because my finger joint don't 'look' swollen it might be 'reactive arthritis' following tonsillitis late last year. i'm on 3 months of naproxen then another blood test.

i guess another 3 months is ok when it's been this long already eh? my only nagging thoughts is that he seems to be only considering the latest pain in my hands and not the rest of everything i went in whinging about, and from what I've read online (honestly not trying to self-diagnose) isn't it better to see a rheumatologist? I have a friend with PA telling me to go see one privately and not wait, lol.

Comments

  • moderator
    moderator Moderator Posts: 4,088
    edited 30. Nov -1, 00:00
    Welcome to Arthritis Care Forums bluebell from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes

    Mod JK
  • stickywicket
    stickywicket Member Posts: 26,339
    edited 30. Nov -1, 00:00
    Hi Bluebell.

    You are not being silly. Many people come on here without a 'proper' diagnosis as that can take some time – some worrying time.

    As you are aware, some sites are more reliable than others. My preferences are for here, ARUK and NHS Choices.

    You don't sound to be whingeing just being naturally concerned and, as you seem to have done some research, you're probably aware that a sero-negative blood test doesn't necessarily mean you don't have an inflammatory form of arthritis. Your GP seems aware of this too (Would that all were) and could well be right about it being ReA. Certainly, there's usually swelling with an inflammatory arthritis but......

    To be honest, if it were one of my sons, I'd be advising them to see a rheumatologist though I suppose one could argue that, having let things drift a bit for so many years, another month or two probably won't make much difference, especially as the GP does seem clued up.

    If tackling the GP seems a bit daunting why not copy some advice (I'm sure you'll find it on one of the sites I mentioned) saying it's best knocked on the head asap and you find this a bit worrying. I think, given what you've said, any decent GP would then refer you if asked. In any case there's probably a long wait to see a rheumatologist so, if it did prove to be ReA (though I'm not sure how one can prove it) you could always cancel.

    Good luck and please don't apologise for coming here.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, I've read your post and am somewhat surprised that your GP has not already referred you to rheumatology due to the high ESR reading: that is indeed an indication of an auto-immune arthritis being the culprit. There are close on 300 kinds of auto-immune inflammatory conditions so diagnosis can take time and is beyond the ability of a GP (they know a little about a lot whereas rheumatologists know a lot about a little).

    My journey to rheumatology did not take the usual route but I recall an early set of bloods showing both ESR and CRP up in 160-170s. Despite that the first rheumatologist I saw was adamant I belonged with orthopaedics. Twerp. I proved him wrong!

    Ask for a referral, I think it would be sensible to ask, even if you see one privately you will probably be referred back to the NHS so that will be another delay. Please let us know how you get on and I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bluebell
    bluebell Member Posts: 25
    edited 30. Nov -1, 00:00
    thanks for the check in :)

    I have to say, I didn't think the naproxen was doing anything much. still waking up early hours, struggling to grip the quilt to move it etc..... then I forgot to take it one day. the pain the next morning made me realise what a difference it is making actually. also keeps me thinking it's not going away, just covering up some of the pain I guess.

    i'm planning to wait for the next blood test in May and ask about rheumatology then I think. thanks for the support and best wishes to all, this site is great :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    In my experience we only appreciate what has been achieved when we stop taking the meds because we think they are doing little: then we find out that that is not the case. OK, they may not being doing all we wish but we soon learn to accept the best we can get. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben