Sons hypermobility pain

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Hi everyone

My 10 year old was diagnosed with hypermobility roughly about 5 years ago , he has always suffered with some Pain but recently he's been suffering a lot of hip knee ankle and finger pain. To cut a long story short after being admitted due to the pain he has seen a physio today whose said along with hypermobility he has tight hamstrings and low muscle tone in glutes he also has a limp is flat footed and his foot rolls out, does anyone know if this can be corrected with exercise or is he likely to suffer long term. I am hypermobility myself with early onset OA at 37 but I never received physio or hospital support until the damage was too far gone.

Sorry for the long post . X

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  • Posted

    Hi,

    My daughter is 10 and also has hypermobility.   She has suffered on and off with a variety of symptoms over the years.  She has flat feet which roll in and has been seen by Orthotics dept at hospital who give her orthotics to wear in shoes.  This relieves some of the leg/ back pain.  She has seen physios on and off who said she had poor core muscles - we would follow a program and then she would be discharged.  About a year ago her pain became worse and worse and with it came chronic fatigue and anxiety.  We are now under the pain clinic as apparently it is no longer classed as Hypermobility, but is Hypermobility Joint Syndrome.  We stumbled across proper diagnosis after being passed from pillar to post.  I really do hope they can help him.  Worst thing you can do is stop exercising and letting muscles get out of condition. Swimming is best for low impact as you probably already know yourself.  Best of luck.

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    • Posted

      Thanks for your reply , his notes say hypermobility syndrome but tbh I don't think any doctor really follows it up. He has so many problems which I believe to be linked but they say no so I feel at a loss . He has anxiety for which he had talking therapy , he has reynauds syndrome chronic urticaria dizziness headaches and ibs . I truly believe these to be one condition if I can go armed with enough information I can then press them to find out. His urticaria is autoimmune. X good luck with your little one. X

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    • Posted

      It sounds similar and horribly familiar. I think kids with complex health history and hypermobility are at more risk of developing chronic pain problems. My daughter has coeliac disease (autoimmune) asthma, plaster allergy. She also had corrective kidney surgery followed by sensitive bladder when she was 4. They reckon this triggered nerves into overexagerated pain responses. She also has splitting headaches despite being strictly gluten free for nearly 3 years. We see a multidisciplinary team of Pain consultant, OT and she has just started CBT for her anxiety. She is currently on Ametrypteline and life is very up and down. But least we are getting best help now. She still has bubbly tummy and digestive issues, but they are linking it with anxiety. Biggest current problem is pacing and keeping positive. She has missed nearly 40% school this year. It's good to know that we are not alone. There's a hypermobility website too very useful. Keep pushing for help. I hope you get answers x

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  • Posted

    Hi. I have joint hyper mobility syndrome. Definitely recommend swimming to keep muscles strong. Not breaststroke kick tho. Easy to dislocate knees.

    I am 52 now. Have had 1 hip replacement. I have had terrible bouts of pain over the years. Nothing helps except keeping fit and learning to cope with pain. I found that once I accepted things were not going to change I was much better in my mind.

    10 is pretty young to be learning that but maybe it will help in the long term. Learning to switch yr mind off from pain is a great tool. Takes a long time to learn.

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  • Posted

    Also go with yr gut. Research as much as you can. Doctors were no help to me what so ever. Once diagnosed I was passed from pillar to post with no actual help. I just got in with it. Tried different things and kept doing whatever helped.

    Be careful with physio. Make sure they fully understand or they can do more damage than good.

    Sorry for gloomy talk. Just being real.

    Good luck.

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