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<blockquote data-quote="Marguerite" data-source="post: 82478" data-attributes="member: 1991"><p>Whatever underlying condition may or may not be responsible for the over-extensible joints, I am here speaking from experience - in our family we were told it is hypermobility of the joints. No other label, just that description. But it HAS been assessed by a referral to a rheumatologist, to make sure that it isn't related to something else and to also give strict advice on what to do. You do NOT say to a patient, "Well don't move the joints then!" because you HAVE to move them. You HAVE to be able to pick up a pen and write, you HAVE to be able to walk, move your arms, pick things up and so on. ALL THESE THINGS DO DAMAGE if you have hypermobile joints and you aren't managing the problem.</p><p></p><p>husband, easy child 2/difficult child 2 and difficult child 3 all have this problem badly. The others have a small amount. husband & easy child 2/difficult child 2 have a lot of joint pain and early arthritis. difficult child 3 is starting to get chronic joint pain (and possibly early onset osteoarthritis from this).</p><p></p><p>What we were told, with easy child 2/difficult child 2 - early onset osteoarthritis is almost guaranteed. If her joints ache, support them and rest them if possible. Strapping a sore joint to reduce its range of mobility is not only acceptable, it's desirable. She is very good at bandaging a sprain or strain. She's been doing it since she was 10 years old.</p><p></p><p>What we were told with difficult child 3 - try to strengthen his muscles to protect against the over-extension, especially in his hands. We were given exercises and recommended to get him to learn piano properly, because the way you hold your hands to play piano pulls the finger joints in rather than letting them splay out.</p><p></p><p>All three younger kids were given permission to use a keyboard instead of having to write, in class.</p><p></p><p>Nichole needs to see a rheumatologist, in my opinion. At the very least, she needs the nurse practitioner to step aside and pass her on to the GP. But by focussing on the things she could understand and ignoring the rest, the NP has made it easier to duck responsibility later. I bet Nichole's file says nothing about the extensible joints, at least not in the detail it should. Maybe "some pain in fingers" or wherever it was, is all that's written, if that. And such pain could be ascribed to bruising, over-used muscles, or even too much deliberate joint cracking.</p><p></p><p>difficult child 1 often deliberately cracks his joints to release the tension and ease the pain in them. He doesn't crack them overmuch or for show, only when they are really hurting. This tells me he already has arthritic changes beginning in his finger joints.</p><p></p><p>It needs to be checked out, but frankly, from here Nichole needs to look after her joints and take the pain seriously. Let the pain warn her to protect the painful joint. Invest in elastic bandages. You can wash them in the washing machine, you just hang them out to dry and then roll them back up ready for use. We have a dozen bandages round the house, all in various stages of use, washing, drying or readiness. husband has a wrist brace he wears when having to lift anything heavy with that hand. easy child 2/difficult child 2 has wrist braces to wear when she's stiltwalking, in case she jars her wrists on dismount. (her stilts aren't the "hold the pole" kind, hers strap to her knees and she just gets up and walks around).</p><p></p><p>Because easy child 2/difficult child 2 did look after herself, she was finally permitted to go "en pointe" in ballet class when she was 17. We had to wait until the ligaments in her feet had begun to tighten. But we made sure we got the medical all clear first.</p><p></p><p>We live a lot longer these days. This doesn't necessarily mean more youth; in fact, it means we spend a lot longer in old age. We need to work to keep ourselves as well and pain-free for as long as possible, but Nichole will have to work at it harder than most, if she has hypermobile joints.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 82478, member: 1991"] Whatever underlying condition may or may not be responsible for the over-extensible joints, I am here speaking from experience - in our family we were told it is hypermobility of the joints. No other label, just that description. But it HAS been assessed by a referral to a rheumatologist, to make sure that it isn't related to something else and to also give strict advice on what to do. You do NOT say to a patient, "Well don't move the joints then!" because you HAVE to move them. You HAVE to be able to pick up a pen and write, you HAVE to be able to walk, move your arms, pick things up and so on. ALL THESE THINGS DO DAMAGE if you have hypermobile joints and you aren't managing the problem. husband, easy child 2/difficult child 2 and difficult child 3 all have this problem badly. The others have a small amount. husband & easy child 2/difficult child 2 have a lot of joint pain and early arthritis. difficult child 3 is starting to get chronic joint pain (and possibly early onset osteoarthritis from this). What we were told, with easy child 2/difficult child 2 - early onset osteoarthritis is almost guaranteed. If her joints ache, support them and rest them if possible. Strapping a sore joint to reduce its range of mobility is not only acceptable, it's desirable. She is very good at bandaging a sprain or strain. She's been doing it since she was 10 years old. What we were told with difficult child 3 - try to strengthen his muscles to protect against the over-extension, especially in his hands. We were given exercises and recommended to get him to learn piano properly, because the way you hold your hands to play piano pulls the finger joints in rather than letting them splay out. All three younger kids were given permission to use a keyboard instead of having to write, in class. Nichole needs to see a rheumatologist, in my opinion. At the very least, she needs the nurse practitioner to step aside and pass her on to the GP. But by focussing on the things she could understand and ignoring the rest, the NP has made it easier to duck responsibility later. I bet Nichole's file says nothing about the extensible joints, at least not in the detail it should. Maybe "some pain in fingers" or wherever it was, is all that's written, if that. And such pain could be ascribed to bruising, over-used muscles, or even too much deliberate joint cracking. difficult child 1 often deliberately cracks his joints to release the tension and ease the pain in them. He doesn't crack them overmuch or for show, only when they are really hurting. This tells me he already has arthritic changes beginning in his finger joints. It needs to be checked out, but frankly, from here Nichole needs to look after her joints and take the pain seriously. Let the pain warn her to protect the painful joint. Invest in elastic bandages. You can wash them in the washing machine, you just hang them out to dry and then roll them back up ready for use. We have a dozen bandages round the house, all in various stages of use, washing, drying or readiness. husband has a wrist brace he wears when having to lift anything heavy with that hand. easy child 2/difficult child 2 has wrist braces to wear when she's stiltwalking, in case she jars her wrists on dismount. (her stilts aren't the "hold the pole" kind, hers strap to her knees and she just gets up and walks around). Because easy child 2/difficult child 2 did look after herself, she was finally permitted to go "en pointe" in ballet class when she was 17. We had to wait until the ligaments in her feet had begun to tighten. But we made sure we got the medical all clear first. We live a lot longer these days. This doesn't necessarily mean more youth; in fact, it means we spend a lot longer in old age. We need to work to keep ourselves as well and pain-free for as long as possible, but Nichole will have to work at it harder than most, if she has hypermobile joints. Marg [/QUOTE]
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