Not sure what’s going on

Katie21
Katie21 Online Community Member Posts: 21 Contributor
in Cerebral Palsy Network

I’ve had Cerebral Palsy since birth (I also have autism), and things ebb and flow but recently things are different.
I have more pain which gets worse when I’m warm or a certain muscle is warmed up.
I used to love going for a drive this now causes pain.
There’s a throbbing in my feet and shooting pains down my legs.
Basically it doesn’t feel like CP stuff so I’m asking has anyone with CP had this?
xxx

Comments

  • Lucy_Scope
    Lucy_Scope Posts: 193 Cerebral Palsy Network

    Hi @Katie21,

    My name is Lucy, and I am a Cerebral Palsy Specialist.

    I am sorry to hear that you are having difficulties.

    Could you explain more about where specifically in the legs you are experiencing the pain? Do you also have pain in your back?

    Best wishes,

    Lucy

  • Katie21
    Katie21 Online Community Member Posts: 21 Contributor

    Hi Lucy

    Thanks for getting back to me.

    I have sharp shooting pain down my legs, they ache even when just doing a 5 min wash the pots. We know I have a grade 1 bulging disc at L6/S1. I seem to be having constant pain in my upper back and a physio has strapped it to take the pressure off, which does help. I also have headaches sometimes it’s really sharp other times it’s just there.

    There’s probably more.
    Many thanks

  • Lucy_Scope
    Lucy_Scope Posts: 193 Cerebral Palsy Network

    Hi @Katie21,

    Bulging discs can be common in ambulant people with CP.

    Please get an appointment with your GP. You need a referral to musculoskeletal department.

    If your symptoms persist or change, for example, you have altered sensation in your toes, you need to go to A&E.

  • trouble5316
    trouble5316 Online Community Member Posts: 147 Contributor

    I cant walk well now with mine i use a frame

  • Mary_Scope
    Mary_Scope Posts: 4,220 Scope Online Community Children and Family Specialists

    Just popping along to say a big welcome to the community from me @Katie21 😊

  • trouble5316
    trouble5316 Online Community Member Posts: 147 Contributor

    Waves hiya

  • Katie21
    Katie21 Online Community Member Posts: 21 Contributor

    I’d probably fall over a frame 😆


    thank you for the welcomes. Xxx

  • trouble5316
    trouble5316 Online Community Member Posts: 147 Contributor

    I joke im a bad driver as well. I cant drive im eppileptic

  • Annie015
    Annie015 Online Community Member Posts: 46 Contributor

    @Katie21 Hi Katie, I've had CP since bith as well although it maybe mild but I struggle a lot more with pains in my legs either standing for too long or sitting down to long to which my calfs bulge and goes firm in a way like solid but once I rest properly they go down again and I lso struggle with spasms in my legs, feet and toes.

  • trouble5316
    trouble5316 Online Community Member Posts: 147 Contributor

    Im 53 now I have use a walking frame to walk katie. My legs only went few years ago. Before then had use a walking stick

  • Annie015
    Annie015 Online Community Member Posts: 46 Contributor

    @trouble5316 hi, i use many different aids to help ie: a wheelchair, a mobility scooter although thinking of getting a powerchair for more independence, a walker and walking sticks.

  • Katie21
    Katie21 Online Community Member Posts: 21 Contributor

    Thanks for all the comments. I think the worrying thing is I’ve competed at World Championship level in Sport. And now there’s a lot of pain just doing a simple training session. I know I’m really lucky I’ve been able to move like I have, I don’t take it for granted, it’s the sudden change we’re worried about

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