Pain in lower back.traveling down

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Tommyc38
Tommyc38 Online Community Member Posts: 15 Connected
edited December 2021 in Cerebral Palsy Network
Hi everyone, my name is Thomas, I am a 40 year old with Spastic Dieplega CP, Quite recently I have started having really bad pains in my back while walking, this is traveling down my hips and legs, I have been taking Baclofen for years, but it doesn't seem to.relieve it, back feels like it's going to lock, any similar experiences or advice, thanks

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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hi @Tommyc38 and welcome :) Thanks for your post, I'm sorry to hear how your back pain has developed.

    @Richard_Scope would be my first port of call for advice, as I'm not familiar with the impact of Baclofen myself. 

    Have you talked to your GP or physio about it (if you have a physio)? Hopefully, they should be able to help identify what's going on, and advise on a plan to manage the pain you've been experiencing. 

    I too have SD CP and have had to deal with similar pains in the last few years, though perhaps not to the same extent. It usually flares up after sleeping in an unfamiliar bed. I've managed to relieve it with a lot of stretches and exercises, but it does limit my mobility for a few days. 
  • Tommyc38
    Tommyc38 Online Community Member Posts: 15 Connected
    Hi Alex, Tommy here, thank you so much for the advice, it's really helpful, yes I have spoken to the GP and had an appointment with my OT BE yesterday and she is going to refer me to Physio again, it's not easy is it, your support is greatly appreciated
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hi @Tommyc38 I'm glad to hear the ball is rolling, and no it's not always easy I agree!

    Do keep us updated with how you get on, I'm sure your experience will be very useful to read for current and future forum members :)
  • Reg
    Reg Online Community Member Posts: 109 Empowering
    Hello @Tommyc38

    I have mild CP and was on baclofen for many years. 

    Like you , the baclofen did not stop the hip locking or hip pain when moving the leg. 

    I was referred to physio years ago and thought the pain was just part of the course and something to put up with . 

    Years later, I got referred to physio again but this time round I also had an MRI that showed hip dysplasia and a pelvic twist as well as osteoarthritis - the later probably down to the way I walk.

    I have had hip surgery and more physio but without concerning you I wondered if it was worth asking for X-rays etc as well as the physio referral. 

    I am told I needed more extensive surgery as a child or teenager but I assumed at that time that any pain was all part of the CP so I made the situation worse by not getting things sorted out earlier by saying how much it hurt. 

    The recent physios I have seen have all been great and have looked beyond the CP as I understand that pelvis and dysplasia problems can be quite common as we can end up with complex hips because of the way we walk.

    I hope the referral to physio does not take too long to come through and that your physios are as kind as mine have been.

    Reg 
  • Richard_Scope
    Richard_Scope Posts: 3,774 Cerebral Palsy Network
    Hi @Tommyc38
    Good to meet you virtually. Have you changed your footwear lately? Do you wear AFOs and if so, have you had a review of them? 
    Stretching and strengthening your core muscles helps a lot, especially for people with CP that walk.

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