Living With Joint Hypermobility

Joint HypermobilityJoint hypermobility means some or all of a person’s joints have an unusually large range of movement.

As a family we live with hypermobility every day. P1 lives with it every day and she cannot escape from it. It all officially began in 2010 when P1 took her first steps. She was an early, premature baby which meant her development milestones were later than average, she sat up unaided at 10months, crawled at a year and eventually walked at around 17months.

I noticed her feet would turn in as she walked and the arches on her feet looked flat. I spoke to my health visitor and GP but both reassured me that this was normal for “new walkers”. But months went by and I was concerned. Finally, my GP referred P1 to a Child Development Centre for concerns about her flat feet.

At first they treated her for flat feet. Giving us insoles and advice. But as the months went by and her arches were still looking flat they decided to do more tests. Jumping, pushing her feet and basically prodding and poking my beautiful daughter. They were concerned that she may have mild cerebral palsy.

They diagnosed joint hypermobility in late 2011 but sent her for an MRI scan in early 2012. Thank goodness all came back clear. She’s been going to physiotherapy sessions for three years now but what does living with hypermobility really mean?!

It means bruises lots of bruises.

It means a lot of falling over.

It means tiredness.

It means planning trips that do not involve lots of walking, and making sure we have a buggy if it does.

It means wobbling when trying to stand.

It means being slower than average.

It means progressing with swimming is very slow.

It means riding a bike becomes such a bigger achievement.

It means feeling pains in her legs often.

They are the basic things we notice each and every day. P1 has recently been bruising more than ever! She’s also been complaining of more leg pains. We are doing so much more walking in Kent. We walk to school, we walk home from school and when we are out we get P1 to walk too.

That mixed with no physiotherapist yet is clearly affecting P1s condition. There’s part of me that wishes she was registered disabled. I feel she’d get a lot more support from school and the doctors.

It’s taken nearly three months now and we’ve still not received an appointment at the local child development centre. I’m devastated. I sit and watch my little girl struggle and be in pain, the doctors don’t seem to care! I’m nearly certain if she was classed disabled we’d get listened to more and they’d get her an appointment and get her the care she needs and that she’s had for the past three years!!
20131117-082551 am.jpgI don’t know if her joint hypermobility will get better as she grows. It’s something she’ll always live with though. I pray it will get easier for her every day! That one day she’ll wake up and she’ll feel no pain and never fall over because her legs simply can’t hold her steady.

I love my little banana legs.

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4 comments

  1. One of our children has Joint Hypermobility. Very late diagnosis for us so still on a learning curve. Struggles with shoelaces, buttons, walking long distances, handwriting & some P.E lessons. Tires easily, sleeps poorly and aches a lot 🙁
    Hard (mentally & physically) as a parent – you need to get the professionals onside. Be firm & don’t be fobbed off – your child needs you to push for them.
    Best of luck.

    • lifewithpinkprincesses

      We’ve had the diagnoses for about three years. We’ve had so much professional support until we’ve moved counties. Good luck in your journey.

  2. I’d never even heard of this before reading your blog, so sorry she has to suffer with this and how awful that she’s not getting the fast help and treatment she deserves. Keeping everything crossed for you that she is seen/helped soon and that things get better as she gets older xx

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