Star has had problems with her knees for as long as I can remember. Even as a baby the only way we could calm her sometimes was by massaging her legs, or moving them in a bicycle motion. We thought it was to ease colic, no I think maybe it was leg pain all along. I took her to the GP several times and eventually she was sent to hospital for an x-ray. Nothing showed up but they did say she was hypermobile or double jointed. It was suggested she may have juvenile arthritis but on mentioning this to the GP I was told I would just be following up an unnecessary diagnosis as there wouldn’t be anything they could do for her. Dismayed by the GP I went home, got Star a bottle of calpol and a couple of wheat bags. This helped for a while.
When Star was referred to a psychologist for a diagnosis into her autism she was sent for a physiotherapy check. Here her hypermobility was picked up again and it was suggested that this was what was causing the pain in her legs. So she was given regular physiotherapy which took place at school so it didn’t interrupt her school life so much. She was also referred to a podiatrist who prescribed inserts for her shoes. I have noticed a difference, but she still gets pain. Recently I bought her a new game for her Wii. She loves dancing, so I bought Just Dance3. She has really enjoyed playing/dancing and it’s giving her loads of exercise. Just like mum she lacks rhythm but I am already seeing an improvement. Maybe learning to dance this way will give her more poise and stop her looking so clumsy all the time?
Looking more into Hypermobility Syndrome I have realised that Star has inherited this from me. I have always known that I was double jointed, but never really associated it with the pain I get. From a very young age I can remember screaming with pain in my knees and my mum massaging me. She always said it was cramp or growing pains, she had no reason to think otherwise. I still get the pain now, and in my ankles and fingers. Some times it’s not so bad, sometimes it’s inscrutable, but it’s something I’ve had for such a long time I just get on with it now. The only thing I can liken the pain to is the the cramp you get during pregnancy, the sort that has you jumping out of bed in the middle of the night and will only go away by massage or walking it off. Sometimes my fingers seize up dead straight, this is painful too and I look like someone with arthritis. I can remember my nan’s fingers like this, to the point when she was very old that a couple of her fingers where ‘stuck’ like it. Was it arthritis or did she have hypermobility syndrome too?
I have also learnt recently that bruising easily, sensitive skin and drooping eyelids are all symptoms that can be associated with Hypermobility Syndrome, both Star and myself have these too. Maybe they will be able to find the right medication in the future, in the meantime the wheat bags are our best friend.
All 3 of mine have hypermobility I find they get very tired easily. I bruise easily as well.
I hope it doesn't affect her too much.
poor thing. Although J doesn't have hypermobility with his ASD, he did lack coordination for a long long time (only recenly learn to ride bike without stabilisers, stilll can't swim a recognisable stroke etc – karate has helped him become a bit more coordinated) but I can sympathise with the pain element as I did have juvenile arthritis from the age of ten and for years had to sleep in a sitting upright position as it was just too painful to lie in bed. Hope things improve for her xxx
I think you can know more about your hypermobility by submitting this online questionaire:
https://franklincardiovascular.com/autonomic-questionnaires/
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