Don’t believe my OA diagnosis

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JJE239
JJE239 Member Posts: 24
edited 7. May 2018, 00:39 in Living with Arthritis archive
Hi all
I was diagnosed with OA in both knees in my 20s and told it is wear and tear. I’m now 40 and symptoms of course are becoming less bearable. I’ve seen doctors and specialists and have some meds although only co-codamol makes any improvement to my life. Otherwise I’ve been told that nothing can be done - I’m too young for replacements. Blood tests show I don’t have RA but I just don’t believe that I can have had so much wear and tear at such a young age. I also seem to have flare ups, not quite like RA ones but with plenty of inflammation. However flare ups and inflammation are apparently not associated with OA. I have damage creeping down my tibia, shooting pains from exposed nerves and hamstring muscle twitches. I don’t suppose it will make any difference to my symptoms or treatment but I would REALLY like some answers and a diagnosis that makes sense to me. Any help would be hugely appreciated, or any advice of where I might go to find some help.

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  • grid
    grid Member Posts: 40
    edited 30. Nov -1, 00:00
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    Hi

    sorry to hear about your arthritis. its a bit strange having wear and tear in knees that earlier in life, bt hey i aint no expert but if it was me i would be more inclined to go private just to see what his opinion is. i am not an expert at OA but i didnt think you get inflammation flare ups. i can understand your thinking.

    im in the same boat, i had severe dysentry which is believed to have set me up for Reactive arthritis. but my bloods for Rhuematiod is very high and usually you get a food poisoning or chylmedia < however you spell it but i had none of these and all bloods for dysentry showed nothing. so i am concern that they are blinkered into thinking the reactive. dont get me wrong i am praying its reactive.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, it's nice to meet you but I am sorry you have had to find us. Arthritis of either sort can begin at any age, OA beginning in one's teens or twenties is unusual but not unheard of. The thinking about OA and its causes is turning towards the possibility of a genetic element, I am one of the lucky ones with a creaky foot in both camps.

    I began my auto-immune kind back in 1997, that has naturally led to OA which was diagnosed in 2011. I began with one affected joint, now it's around forty; some joints have one kind, some the other and others both. My OA certainly worsens in damp or cold weather, if I eat too many acidic foods and if I physically overdo things: inflammation can be part of the condition. Many on here with OA take pain relief together with an anti-inflammatory medication as and when needed. Unlike my psoriatic arthritis I can exercise a certain amount of control over the OA by pacing myself and watching my diet but, when things go wrong, as they recently have, a few days of topical Voltarol clears the inflammation.

    My auto-immune arthritis also causes inflammation but in my case the inflammation did not stop or clear until my immune system was controlled by medication. There is much general misunderstanding about arthritis, its causes and effects: people think there are two kinds, OA and rheumatoid, if only. There are around three hundred auto-immune inflammatory conditions and it is not unheard of to begin with OA then later develop one of those.

    Have you had Xrays of the affected joints? That is the usual diagnosis tool for OA but blood tests do not necessarily give the whole picture (something which many GPs may not know). There are two kinds of auto-immune arthritis, the sero-positive sorts where rheumatoid factor is present and sero-negative, where it isn't. I have one of those and, to complicate matters further, RA itself can be sero-negative. Arthritis is a complex condition, of the two I far prefer my OA as I know where I am with that. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,732
    edited 30. Nov -1, 00:00
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    As usual, I am in agreement with D D. OA can strike young and can cause inflammation. Otherwise, why would anti-inflammatories be the standard treatment?

    I, too have an autoimmune arthritis plus OA. I can't relate to the shooting pains in the leg or hamstring problems. Both my knees were replaced when I was 35 but I'd had RA for 20 years by then.

    I think I agree that you'll only really have closure on this diagnosis matter if you get a second opinion.

    For me, two big differences between my RA and OA is that RA can flare out of the blue and causes overwhelming fatigue. It almost always requires a change of meds. OA is bad if I've overdone things pure and simple. Rest qnd pain relief sort it out.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JJE239
    JJE239 Member Posts: 24
    edited 30. Nov -1, 00:00
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    Thanks all,helpful comments. My confusion comes because the pain doesn’t always relate to having overdone things. I can have significant pain and instability without having done anything different in my daily routine. In fact, I need a certain amount of movement - there’s nothing worse than a sedentary day for pain. Also inflammation doesn’t seem to relate to pain; sometimes I have pain but no swelling and sometimes swelling with no pain.
  • stickywicket
    stickywicket Member Posts: 27,732
    edited 30. Nov -1, 00:00
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    https://arthritiscareforum.org.uk/viewtopic.php?f=8&t=40794

    I would think, based on my own experience only, that if you've had this for 20 years and it hasn't spread to other joints it's unlikely to be RA at least. RA usually starts in the small joints then spreads. Mine began in fingers, quickly moved into feet and wrists and, by the time I was 20 years in, most other joints.

    However, not all experiences are the same.

    You might be interested to read that methotrexate, a routine treatment for autoimmune arthritis, has been trialled for knee OA. Above is the reference but I don't know any more.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    In my experience pain levels bear no relation to over, under or not doing things. Over the years I have learned that if it's hurting more to do less, if it's hurting less to do more. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • WhaleRoad
    WhaleRoad Member Posts: 32
    edited 30. Nov -1, 00:00
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    I don't believe your OA diagnosis either.

    It's not normal to get OA in both knees in your twenties so, even if the diagnosis were correct, you'd want to know WHY. I listened to doctors for a long time, even when my instincts told me they were wrong, because I wanted to trust them. They were wrong and my gut feelings were right.

    There are other kinds of inflammatory arthritis that won't show up in blood tests. Mine didn't. You shouldn't need to go private, you are entitled to a second opinion.
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    I would ask for another opinion from a rheumatoligist , when joints are worn out they all look like OA , but if you are having inflamation you would think there is something else going on & not that many on here are positive for RA , you can have RA without a positive blood result & there are hundreds of inflamatory arthritis

    the main thing is the get it under control so its not doing any damage
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, rather than further hijack Mama's thread I thought I would ask you here how you got on today with the GP: I hope you have your referral. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • JJE239
    JJE239 Member Posts: 24
    edited 30. Nov -1, 00:00
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    Thanks to both of your excellent advice I went in well equipped! The doctor has booked me in for blood tests not only for inflammatory markers but also for vitamin D deficiency and coeliac disease to investigate the fatigue element. I’ve also got a referral to the rheumatologist but it might take a couple of months to come through. So grateful for all the support, advice and info from this forum. I feel like I’m some way towards getting some answers.
  • stickywicket
    stickywicket Member Posts: 27,732
    edited 30. Nov -1, 00:00
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    That sounds like a good appointment.

    Vit D deficiency is quite common in UK. We don't get enough sunshine.

    As for coeliac, my son has it or, should I say doesn't (or, at least, has no symptoms) now that he knows to follow a gluten free diet.

    I hope, one way or another, things improve for you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Right, things are moving in the right direction and that is a good thing. Vitamin D deficiency is common, I routinely take a supplement throughout the autumn and winter months to keep me topped up although it hardly turns me into the Duracell bunny. :roll: I hope the appointment comes through sooner rather than later but in the meantime it may be worth your starting to keep a short daily record of pain and tiredness levels, what hurts when, what aggravates matters or eases them; keep it brief but enough for the rheumatologist to get a better all-round picture of you and how you are being affected. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • scozzie
    scozzie Member Posts: 333
    edited 30. Nov -1, 00:00
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    Hi JJE

    Welcome. When I was first diagnosed with OA (in my early 50s) I was sent for X-rays, which showed, at worst, only minor changes – I was told the condition can be weird in that someone can show extensive damage to their joints, but rarely experience much pain, whilst others can show little damage, like myself, and suffer – over the years my pain has either reduced or I've just become more conditioned to it, plus I'm now able to manage it better (apart from the newest additions to my OA party), ie I now what I can and can't do, generally.

    With only mild OA I am able to stay active and try my hardest to do so – I'm not giving into it.

    Good luck.
  • JJE239
    JJE239 Member Posts: 24
    edited 30. Nov -1, 00:00
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    Thanks all. Had blood tests on friday but pretty sure I’m neither coeliac nor vitamin d deficient. However I have definitely come out of a few weeks of feeling rubbish, that thing they call a general malaise. It may be perverse but I would prefer to have an autoimmune diagnosis because at least then I’ll know and have potential treatment. Hopefully see a rheumy in the next few weeks.
  • Airwave!
    Airwave! Member Posts: 2,468
    edited 30. Nov -1, 00:00
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    O A does cause flare ups, it can come and go in intensity and have the same affect when it comes in. I was diagnosed 37 years ago and the pain is near constant in the worse affected joints but often can vary and have the same pain as in a flare up..

    At the end of the day pain is pain whether its from any of the arthritic types and fatigue is a common affect and sleep through exhaustion is a welcome relief, says he who took Tramadol at 3am and is still sitting wrting on my tablet at 6am! So much for sleep!