Adice please?!

amyloveheart Member Posts: 12
edited 9. Jun 2012, 18:30 in Young people's community
Hi, my name is Amy and I'm 18 years old. I've suffered with painful joints since I was about 11 years old. During that time I've had many flare ups, sometimes so bad I can't get out of bed. Both my father and my grandmother have rheumatoid arthritis, and have had since they were both very young. My pain started in my right knee, then moved to both my knees, I've since had trouble with my hips, my right elbow and my right shoulder. My shoulder is whats hurting at the moment, it's so bad when I wake in the mornings, until the strong painkillers I have been prescribed to take kick in, I cannot move it. I've had several visits to the doctors and all the seem to do is tell me its an inflammatory problem and prescribe me more painkillers. I've had a blood test to check for rheumatoid arthritis, but it came back negative.

The only way I can describe my pain is, on a good day, I'm very aware of my joints, I can't straighten my knees to quickly, I have to take it slow. And on my bad days, its so excruciating I can hardly move, all I can do it cry.

I've spoken to my father many times and he says that that I'm experiencing sounds very similar to to pain, when he first started having it (all though his is much worse now as he has had it for nearly 40 years)

Every time I visit my doctor, they all seem to say the same thing, but I never get an answer. I was wondering could it be rheumatoid arthritis even if I tested negative? Has anyone had a similar experience as me?



  • stickywicket
    stickywicket Member Posts: 27,687
    edited 30. Nov -1, 00:00
    Hi Amy. I’m answering your post although I’m far from being a ‘young person’ because, as you can imagine, young people don’t hang around here any more than they have to :) . They get better and rush off to do stuff that’s more fun. So, just in case none of them are around……

    First of all, please remember I’ve no medical training, only many years of rheumatoid arthritis behind me. I have to say, what you describe does sound as if it could be RA and, with your family’s history of it, I’m pretty sure, if it were me, I wouldn’t just accept the blood test result. There are others on here who are much more clued up about these things than I am and I suggest you copy your post to the Living With Arthritis forum where more of them will see it.

    The thing is, if it is RA, or some other auto-immune form of arthritis, you need it to be diagnosed and treated as soon as possible because the meds they give you will slow down the disease and, if you’re lucky, you too will be able to get on with your life and not hang about here. :wink:

    I think I’m right in saying you can ask to be referred to a rheumatologist whether your GP likes it or not. If not, you can change your GP. Either way, I hope you’ll have the courage – and it does take courage – to persist. (Would your Dad go with you? It might help.) Let's know how you get on, Amy. A diagnosis of arthritis is not a good thing but it's better than no diagnosis if you do have it.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • amyloveheart
    amyloveheart Member Posts: 12
    edited 30. Nov -1, 00:00
    Thanks so much for your reply, I will definitely take your advice and get in touch with my GP, hope I can get some answers finally!
  • MrDJ
    MrDJ Member Posts: 267
    edited 30. Nov -1, 00:00
    i thought i was seeing de ja vu :lol:
    ill copy my posts and yours from

    the other thread to here so we can keep you all in one place Amy.

    Hi Amy
    sorry to hear of all your pains you have been going through at such a young age.
    which doctor did you see. was it your GP or a rhumatologist and have you got any idea which blood tests they might have done.
    the main ones they normally check is ESR and CRP which measure the increase in inflammation in the body.
    just because these tests come back normal doesnt mean the patient hasnt got arthritis.
    there are quite a few different forms and ostio and rhumatoid are the most common ones.

    if it was your gp that done the tests i would try and get another appointment and ask could you be refered to a rhumatologist as you cant cope with the pains anymore.

    there was 1 doctor i saw 27 years ago that went by the book. if it doesnt show up on tests then you havnt got it was the abrupt reply i got.
    for my next appointment i refused to see him again and the next doctor done various more tests and i was told i had ostio arthritis as soon as the results came back.

    have you had any xrays taken in the last year.
    it sadly sounds like you are being fobbed off and if i were you i would persist until they refer you to a specialist who knows what they are talking about.

    good luck and i hope they can help you out soon or change your medication with something that might help the pain more.

    EDIT: just seen this post but i know nothing about the condition. might be worth comparing notes on pain living-with-arthritis-forum-f8/just-diagnosed-t31409.html

    Amy Wrote:
    Thanks so much for your reply! I've been to see my GP about 12 times this year already, and I think I'll phone them tomorrow, make and appointment, and demand they refer me to a rheumatologist. The blood test I had was called RF (rheumatoid factor). They have never sent me to have xrays, they clearly don't think its necessary :( which hurts me to no end, because they don't see my when my pain is so bad I can't get out of bed!

    I'm SOOO tired of being told there's nothing wrong because the blood test says so! If they felt even a tiny bit of my pain they would understand.

    I've been dealing with this for half my life, and I'm done with doctors.

    I really appreciate your reply, thanks so much Jim! You've given me the courage to stand up to my gp and to get answers.

    My reply:
    your welcome Amy. if i could help more i would.

    now this may be a shot in the dark but its worth a go.

    i was 21 when my OA was diagnosed. then a couple of years later my left eye started going blurred. long story short i had a specialist blood test called a HLAB27 which came back positive. i was then told i had ankleosing spondilitis but as it was not affecting my spine but my eye the specialist told me i had juvenile anky spon.
    last thing i expected was to be called a juvenile at 21 (ok i did and still act like one some times)

    the thing is there is no pattern to these ruddy conditions. it affects everyone differently.
    as you was 11 when your pains started i would take this quick question and answer screening quiz that i found while reading up on the RF blood test.

    it might not help but depending on the results it might be worth copying them down and showing your GP to explain more how its affecting you.
    i know what its like when your sitting in front of them and all they seem to do is type on their ruddy computer instead of fully listening to you.


    mine came back:
    You answered 12 items out of 21 correctly.

    Your score is 57%. Your child has some of the symptoms associated with juvenile arthritis. Please consult a rheumatologist for a complete evaluation and proper diagnosis.

    hope it helps.
    Amy Wrote:
    Thanks for the link Jim! I took the test and scored 16 out of 21, I will definitely take the results to my next appointment with my GP

    Amy x

    glad i didnt have to write that all out again. thank god for copy/paste :lol:
  • loopylou94
    loopylou94 Member Posts: 24
    edited 30. Nov -1, 00:00
    I was diagnosed just over a year ago with PA and my father aslo suffers from RA when i first went to the gp with joint pain we were sent away with varioius pain killers and test however they were crtain i did not have arthritis as i did not test possitive for rheumotiod factor. Despite this we were very persistant and kept going back and eventually we were refered to a rheumotologist who very quickly diagnosed me with PA. SO keep at and be persistant and you will get a break through like i did :)
    loopy lou :)
  • thomasjack
    thomasjack Member Posts: 4
    edited 30. Nov -1, 00:00
    Dear your so young to face joint pains. Join pains have many reasons like lack of essential vitamins, skinny body, hard working, lack of blood, weak bones. It is found mostly in old age people who spend more life. I suggest you to do simple work out for 15 to 20 mints daily. Use bicycle mostly, don't stay or sit for a long time at a single spot. Use fresh fruits & raw and boiled vegetables mostly to get all the essential vitamins and minerals. These help to increase body power against diseases.
  • Annah
    Annah Member Posts: 92
    edited 30. Nov -1, 00:00
    Just a thought, but my condition often causes joint pains in the young, does not show up on blood tests or x-rays and is frequently missed by rheumatologists. But it might be something worth eliminating from your enquiries. It's called Joint Hypermobility Syndrome, or Ehlers-Danlos Syndrome (hypermobile type).

    I'm not saying that's what you've got, of course, but I'm mentioning it because it usually affects younger people, it runs in families and is quite rare (although under-diagnosed so it might not be that rare). Many of us with HMS get osteoarthritis too, sometimes ridiculously young, due to our unstable joints wearing in an unusual way.

    Might be something to mention to your rheumatologist.

    It is also possible to have so-called sero-negative inflammatory arthritis, which isn't RA, but something related. I've got that too, but no one has yet been able to put a label on it. Not all joint conditions are easy to label - sometimes doctors have to just try this or try that until they find something that works.

    I hope you can find some answers soon.
  • Kayl
    Kayl Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi, ive had similar experiences to you. My first joint pain was when i was 12. my kness swelled to triple the size and i could walk for 3 days. when i went to the docs they said i must of sprained something or fell wrong, even though i knew i hadnt and it felt like i wasnt being took seriously.

    when the pain got worse i went back to the docs for blood tests and things and some did come back negative but i knew something was wrong so i persisted and persisted and at 18 i was diagnosed with full body arthritis and fibromyalgia by a locum doctor. I'm still back and forward from the docs for pain relief and advise and i know how tough it can get when all you want to do is cry but all i can say is dont give up! keep going to the docs and trying to get answers and try to have hot baths and things to relax you a little and most importantly, try and stay positive =) Good Luck xx
    When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile...♥
  • acetweety
    acetweety Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi Amy,

    Im Deborah, Im new here as well. It horrible to have joint pains, sorry your having a rough time.

    When I was tested for RA 4 times the rhuematoid factor test came back negative, but i kept going back and complaining that it was still painful.

    The 5th time I was tested it came back and a strong positive and has ever since. So yes it is possible for it to come back negative.

    It may or may not by RA but there are alot of other inflammatory conditions that cause this so would suggest you keep going back to the doctor until you get an answer, like others have said, the sooner you get it diagnosed the quicker you can get the right treatment.