Osteoarthritis and Primary Lymphoedema

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Good Morning Everybody,

I have Primary Lymphoedema (born with it) in both legs and feet. Have now been diagnosed with arthritis in both knees and feet, right knee is by far the worst. Have been told that knee replacement is not an option due to severe swelling from the lymphoedema.

Is there anyone else here who has the same problem(s). Would value any help/advice as struggling with mobility. I have fallen quite badly several times, the most recent 3 weeks ago.

In advance, thank you so much. 🌺

Comments

  • stickywicket
    stickywicket Member Posts: 27,719
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    I'll be honest, Anne, I've never heard anyone on here mention primary lymphoeďema. From many years of RA and OA, though I'd say your best bet is to ask to be referred to a physiotherapist who will be able to give you exercises tailored to your own needs. Physio has been very good to me , keeping me mobile.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Anne16
    Anne16 Member Posts: 14
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    Stickywicket - thank you so much for taking the time to respond. I thought it would be the case. I have been referred by my GP to a Physio and see them on 2nd September. However, he does not hold out much hope of improvement as I have so little mobility in my ankles and feet anyway.

    Once again, renewed thanks.🌺

  • stickywicket
    stickywicket Member Posts: 27,719
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    You're very welcome, Anne, and I do hope you'll be able to prove your GP wrong. I've had RA and OA for so long that my ankles have fused as have several bones in my feet . What I think able-bodied people sometimes don't realise is how much we can gain from tiny Improvements. I've found that time after time. Plus, it's worth the effort just to hang on to the range of movement to we have. I wish you every success.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Anne16
    Anne16 Member Posts: 14
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    Hi thank you again so very much. The problem with my ankles is the swelling from the lymphoedema, as it is with my knees. Plus I do believe that the OA has been missed for so long, thinking that all of the swelling and pain was from the Lymphoedema. It was only when GP requested XRay's of my knees that it was found. In fact the Radiologist's comment was 'your right knee is absolutely short at', which cheered me up no end!!

    Anyway, I am 81 in a couple of week, still here, and hopefully for a little while longer too.

    I'll speak to you again, if that is OK, when I have seen the Physio to bring you up to date.

    Take care, and renewed thanks,🌺

  • frogmorton
    frogmorton Member Posts: 29,488
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    I would also look into getting some walking aids so you don't fall @Anne16 that is the very last thing you need.

    Sending ((()))

  • stickywicket
    stickywicket Member Posts: 27,719
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    I think, when we're used to pain, ignoring it becomes a habit. I really believe this is a helpful way of dealing with it but the knock-on effect is that we can sometimes ignore pain that we shouldn't. I have several instances of being guilty as charged on that account.

    I also have several instances of minor, even minimal, changes making appreciable differences. I do hope that happens for you and, yes, please do update us here on how things are progressing (or not) and how you feel about them. Good luck!

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Anne16
    Anne16 Member Posts: 14
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    Hi Stickeywicket,

    Update as promised. Saw the physio last week. I had to follow him down a long corridor. When we got to his office, the first thing he said was 'I am going to get you a stick. You are an accident waiting to happen'. To be fair this made me feel quite thankful that at least somebody could see how I was struggling and and that I was walking lopsided. I am so pleased to have the stick it has become my daily companion. I did use a stick when I had my allotment, but I gave it a nickname 'Hoe'! As he only had 15 minutes allotted to me, we covered barely the essentials. I see him again next month. Since then I have spoken with the Lymphoedema Support Network about knee surgery for those suffering with particularly Primary Lymphoedema and they are aware of people having this done. it depends on the surgeon and also on the extent of the Lymphoedema in the affected limb. So - when I get an opportunity, I shall have a word with my GP about being referred onwards.

    I hope you are keeping well. Take care and thank you for responding to my initial post. x🌺

  • stickywicket
    stickywicket Member Posts: 27,719
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    Physio departments are always down long corridors. In my more truculent moments I am convinced they do it deliberately - if you make it there you don't need physio 😉

    I'm pleased you got someone observant and that the stick helps. There was a time when I eschewed all aids and appliances but that's a luxury I can no longer afford. Bring 'em on, I say. I love my rollator.

    The good thing about being referred to a consultant is that, if we have multiple problems, we get the best. The rest daredn't touch us in case we break!

    Thanks for the update and please keep them coming.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright