Another newbie saying hello

Laineee
Laineee Member Posts: 5
edited 21. Dec 2018, 18:27 in Say Hello Archive
Hello!
Just discovered this site after being told a couple of weeks ago that I most likely have some sort of inflammatory arthritis (exact type still TBD) in my sternoclavicular joint of all places, which is also causing knock on pain in my neck and shoulder muscles. Having had separate issues in both ankles over the last few years that were never fully explained, it seems I have had this off and on for a while. Still - onwards and upwards... at least I'm now closer to knowing what's behind it :)

Comments

  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hello and welcome Laineee to Versus Arthritis Forum

    Our new TV campaign is catching the people we want to reach, it's always good to welcome new forum members. Our forum users have a ranged of arthritis who are very welcoming, helpful and offer really good support.

    Please enjoy the forum.

    John
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us.

    People who don't know much about arthritis assume there are only two kinds, only the elderly get it and it affects hips and knees: all three are wrong. There are around three hundred kinds of auto-immune inflammatory conditions plus osteoarthritis, it can strike at any age and if it's a joint it can be affected.

    I am one of the lucky ones who has done the double, I began my auto-immune arthritis in 1997, began the meds in 2002 and was finally accurately diagnosed in 2006 which made no difference to anything. Having been born with auto-immune issues this was of little surprise but the diagnosis of OA, which was made in 2011, was a shock:

    I hope you find the forum to be of interest, we all get it because we've all got it. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Laineee
    Laineee Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you both. Just to have a place where people 'get it' will be such a bonus, as so many people I've spoken to just don't seem to have a clue. I saw a physio last week to try to sort out all the muscle issues and she told me that I just needed to stop dwelling on the pain and suggested that I see a counsellor rather than anything practical to get my shoulder mobile :roll:
  • stickywicket
    stickywicket Member Posts: 26,104
    edited 30. Nov -1, 00:00
    Hello and welcome, Laineee.

    Sternoclavicular is a new one on me but I see – correct me if I'm wrong – it's the bit of bone connecting the top of the breastbone to t he shoulders.

    A physio who doesn't give exercises? How strange. We keep banging on about the value of exercises on here. Didn't she give any at all? If you look here https://www.arthritiscare.org.uk/living-with-arthritis I'm sure you'll find some for the shoulders but do run it past your physio first, next time you see her, as there might be some reason why you shouldn't be doing them if your diagnosis isn't certain.

    As for pain – she's actually right in that it's best not to think about it as that only makes it worse. Distraction is the tool that many of us on here prefer ie concentrating on anything (a hobby, the TV, a book etc) which absorbs our attention so that we can't think so easily of the pain.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Laineee
    Laineee Member Posts: 5
    edited 30. Nov -1, 00:00
    Yep, that's the joint.. apparently quite an unusual one and I have IA in both sides to varying degrees.

    Seeing the physio again tomorrow, so hopefully she might be a bit more helpful than last week. Forgot to mention her other advice to give up my job and go travelling - quite amusing given that my employer is literally paying her wages :lol:

    I do get the value of distraction and have really done nothing outside of work these past 6 months other than read, watch TV and research holidays I can't afford- it's the times when I'm sitting at my desk or lying in bed feeling like someone is stabbing me in the neck where I struggle with being able to focus on something else. I guess I've been hoping for some kind of miracle, but I'm slowly realising I just need to find a way to work around it somehow.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    IA? I am familiar with many intials but not those two are not ringing a bell: we are all fluent in the initials language that are ours and forget that others may not speak the same version. :wink: Pain dullers are an essential part of my armoury but distraction is the best of all, once the pain has had the sharper edges 'dulled' it is easier to ignore it.

    Physios know their field but not much about the fields of other specialists. Yours should be taking the opportunity to learn from you, to broaden their experience and knowledge. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,104
    edited 30. Nov -1, 00:00
    Laineee wrote:
    I guess I've been hoping for some kind of miracle, but I'm slowly realising I just need to find a way to work around it somehow.


    Hey, you're getting there :D Yes, we'd all like a quick fix but that's not the way with arthritis unless one has it in just one joint that is easily replaced. But learning to live with it is half the battle. Learning what we can do and when we can do it, pushing the boundaries sometimes knowing there will be payback but accepting that it was worth it.

    Do you take any meds?

    Hope the physio goes well. Did you remember to ask about the exercises?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Laineee
    Laineee Member Posts: 5
    edited 30. Nov -1, 00:00
    This week's physio was a big improvement, partly because I'm the middle of a rare 'good week' where the inflammation seems much less... which means the knock on pain and stiffness in my neck and shoulder muscles is reduced and my movement is better.

    So this time she apparently 'released my first rib' (whatever that means - all i know is it was not a pleasant experience!) and worked on some of the pressure points in my neck, all of which is helping keep my neck pain under control at the moment. Strangely with the muscle pain under control, I'm more aware of the pain in my joint but it is much more manageable than muscle pain for some reason.

    As for range of movement exercises, I've been doing those for the last 6 months anyway based on what she told me 3 years ago when I had issues in my other shoulder - until a few weeks ago, she had been convinced all my issues were stiffness due to posture when sitting at my desk, so I've always been conscious of trying to move around a lot to keep things from seizing up too much. I suppose that's a very long way of saying she's told me to keep doing what I've been doing.

    Have also got my rheumatologist appointment through for 2 weeks time to hopefully narrow down further exactly what type of arthritis we're dealing with, but for now I'm thankful for the few good days I've had and keeping positive that they'll last over the festive period.

    Apologies for being so long winded but as mentioned at the top of the thread, it's nice to be able to 'chat' with people who get it :)
  • JoeB
    JoeB Bots Posts: 83
    edited 30. Nov -1, 00:00
    Is your Physiotherapist a Member of the Chartered Society of Physiotherapy (M.C.S.P) .

    Some physios have undertaken recognised further training in manipulative therapy such as membership of the MACP (Musculoskeletal association of Chartered Physiotherapists) - has yours.

    Are they registered with the Health and Care Professions Council (HCPC).

    May just be worth verifying if you haven't already done so.

    Arthur
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