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Marine37
Marine37 Member Posts: 3
edited 19. Nov 2018, 10:38 in Say Hello Archive
Hello.
I've been driven to find you because of one of my daughters aged fourteen.
She's been suffering from an extremely painful knee for the past ten weeks. Pain varies from day to day but some days is extreme and painkillers don't really touch it. It's generally swollen and often hot to the touch. It doesn't appear to be stiff though. Unfortunately she has brittle bone disease so they have spent eight weeks putting her leg in a cast and then in a brace before giving her an MRI scan. Apparently the MRI shows fluid around the knee but no structural issues; there was also nothing on her x-ray. Her bone consultant today and also another consultant at a different hospital have started to use the arthritis word; is this likely with these symptoms? He has put an urgent referral in to Rheumatology but I have no idea how long that will take to come through. In the meantime, if it is likely to be arthritis, is there anything particular I should be doing? Pain is causing school to be very hit and miss at the moment.
Thank you!

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Marine37,

    Welcome to the forum. I'm really sorry to hear of the pain your daughter is in, you must be feeling very worried.

    Excess fluid around the knee on an MRI can indicate arthritis, although it's not the only possible cause. If you can, it might be worth asking the consultant, or the department, how long urgent referrals to Rheumatology generally take in your area - these things can vary so much from place to place. Whenever I've asked I've found medical staff very willing to give you a general ballpark idea of how long the wait times usually are from their recent experience - and even if they have to stress that they can't guarantee these times I've always found them to be a pretty good indicator.

    There is a leaflet on Pain and Arthritis that you can download or order from the Versus Arthritis website. The link to the download is here:

    https://www.arthritisresearchuk.org/arthritis-information/daily-life/pain-and-arthritis/pain-and-arthritis.aspx

    Whilst some of the advice is specifically appropriate after a diagnosis of arthritis there is other advice that would be worth trying whilst you are waiting for the referral. e.g. trying heat (heated rice pads or hot water bottles) or cold (ice packs or cold compress) and massage.

    Hopefully some of our forum members might be able to offer some of their own experiences too.

    If you feel you'd like to speak to someone there is a Versus Arthritis helpline, which operates Monday to Friday from 9am-8pm. The number is 0800 5200 520.

    Do let us know how things go for your daughter. If she does get a diagnosis of arthritis there is a forum for young people in this online community (if you scroll down from the "Say hello" forum you've posted in you'll see it). She might find it good to speak with other teenagers in similar situations.

    Best wishes,
    Ann
  • Mclean70
    Mclean70 Member Posts: 14
    edited 30. Nov -1, 00:00
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    Hi Marine37,

    I suffer with very painful swollen knees. When it is at its worst, pain relief does not touch it with me either.
    I find a small tens machine helps me alot when it's really bad ( puting the 4 pads around the knee cap, 2 above 2 below) and an electric heat pad can be soothing.

    Hope this helps and you get to see the rumatoligist soon.


    Sent from my SM-G900F using Tapatalk
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I am sorry to read about your daughter, how very distressing for both of you. I have a form of auto-immune arthritis which began in my left knee, it was characterized by much swelling and my knee was hot to the touch. This was a long time ago, back in 1997 when I was 37 and a lot of arthritic water has passed under my bridge.

    I am surprised that a scan was not done before they plastered it etc. but the possibility of an arthritis being a cause of the swelling would have been far from the doctors' minds given her tender years. Arthritis is a condition wrongly associated by those not-in-the-know with grannies (never grandads for some reason) but it can start at any age and indeed does. I know nothing about brittle bone disease but one would think that things were rough enough already, yes? :(

    When my knee was hot and fat I would rest with my leg elevated, supported under the knee and ice it with a bag of frozen petit-pois (they draped better than garden peas). The help this gave was marginal because as soon as I up and about again it would re-swell but at least I felt as though I was doing something. Pain relief is useful but will not take it all away, it merely dulls the sharper edges. I think your GP is best-placed to advise you about that. I never found TENs effective but others swear by them, it takes time and experimenting to find what works the best for each individual.

    I wish you both well and please let us know how things develop. 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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    Hello and welcome from me too.

    I really wish I could help. I can find no correlation between arthritis and osteogenesis imperfecta but that merely puts your daughter on a level playing field with the rest of us. Arthritis can certainly happen when we're young. I think osteoarthritis would be unusual – but not impossible - in a 14yr old. The autoimmune types (I have rheumatoid arthritis) can arrive at any age but usually a flare in one of these is accompanied by severe fatigue and an almost 'fluey' feeling. I was diagnosed at 15 so I can empathise with the school business. The doc told me to only go in when I had an exam (O-levels) and to do no more than one per day.

    It's so hard for us to say whether or not this sounds like arthritis because (i)we're not docs and (ii) people's symptoms vary enormously. I started with painful, swollen fingers. It soon moved to an ankle too. The knees came later but others on here started off with a knee or knees.

    I do hope you can get some answers soon. I think the 'not knowing' is the worst bit, plus, of course, the fact that it's your daughter. I think all parents would prefer to undergo things themselves rather than seeing our children in pain.

    As far as arthritis goes, I was always told to keep taking my joints, very gently, through their full range of movement every day in order to maintain it. https://www.versusarthritis.org/about-arthritis/managing-symptoms/exercise/ . And, of course, ensure she has a healthy diet, But, if it's not arthritis, I've no idea what's best.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Marine37
    Marine37 Member Posts: 3
    edited 30. Nov -1, 00:00
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    Thank you for your responses :)
    I actually have three members of my family with brittle bone disease so it's always a bit manic here! They plastered her leg before a scan (but after an x-ray) because she's had a lot of fractures and I think the thought was there might be a micro-fracture in the patella (these don't necessarily show up on x-ray) but unfortunately this hasn't been borne out. Stickywicket you are right that there is no correlation between arthritis and brittle bones. If it does prove to be arthritis her metabolic bone consultant has said she will be virtually unique (and he's pretty eminent in a worldwide sort of way so I believe him!) so I am sort of hoping that he is wrong but then wondering what else it might be. He told us that because it is swollen, often hot to the touch and always painful, sometimes excruciatingly so, that it is clinically arthritis even if it is a symptom of something else. Does that sound feasible? Her pain does vary from day to day and even on a bad day when any sort of painkiller doesn't touch it (including tramadol which we have for bone issues) it often does get a bit better towards the evening; it can strike in the night though. Again, does arthritis behave like that? As for fatigue, she has that anyway as part of O.I. (Osteogeneis Imperfecta - brittle bones) and also has a diagnosis of the sleep disorder Periodic Limb Movement Disorder so it's hard to tell if that's worse or not. I feel very lost. I sort of know what I am doing with O.I. and I don't like seeing the pain and not knowing what on earth is going on. The only thing I can see that might even vaguely match her symptoms is bursitis but surely that would have cleared up after ten weeks especially after the enforced rest her leg has had.
    I will give the TENs machine a go - we have one for back pain and she isn't the greatest fan of it but I think she will be willing to try anything on a bad day. We have been doing alternate heating and icing which has been recommended and does help but only in the moment and not really for long enough to allow her to then get on with her life.
    We've been advised by both her bone team and her pain management team that she needs to be seen very soon and they will chase her appointment if we haven't got a date by next week (we have shared care across two hospitals an hour and a half apart which complicates things) so I really hope we get an answer soon.
    Thank you once again for all of your ideas.
  • stickywicket
    stickywicket Member Posts: 27,732
    edited 30. Nov -1, 00:00
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    I, too, hope you can get an answer soon. Waiting and wondering is the hardest thing.

    I don't know if the symptoms you describe would be 'technically arthritis'. To me it sounds possible as OA (osteoarthritis) is, I think, diagnosed by such things. One would expect x-rays to show something or other but it's possible, in the early stages, that they might not. Pain is a strange thing. One man's twinge is another's agony.

    When you ask "Does arthritis do that?" I can only reply that it does if it wants to. Certainly with RA it's worst mornings and evenings but I find OA tends to strike any time it feels I've been overdoing things. I wonder if your daughter's Periodic Limb Movement Disorder might trigger things in the night (whether the 'things' are arthritis-related or not).

    I've never had bursitis, though some forum members have. On the basis of no medical training whatsoever, I'd guess that it, or anything else, could last longer in someone with other medical issues but, as I say, I'm no medic.

    I do hope you get a quick appointment and then a quick answer. That, I guess, would constitute the best of a bad job.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright