Hi, I'm mimiof4! I'm looking for advice about living with CP and how to deal with worsening pain

mimiof4
mimiof4 Online Community Member Posts: 1 Listener
edited July 2022 in Cerebral Palsy Network
I’m looking for some advice about living with cerebral palsy and how to deal with my pain getting worse 

Comments

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    Hello @mimiof4. Welcome to Scope's forum. It is great to see you have joined us. How are you today?

    I can hear you are hoping for advice about living with cerebral palsy and how to deal with your pain getting worse. Would you like to tell us more about which aspects of life?

    In the meantime, I will tag @Alex_Scope and @Richard_Scope because they are most likely to have some advice for you. I am hoping some of our wonderful community members might also be share to share their advice with you.

    You might also find our section of the forum 'cerebral palsy' useful. If we can do anything else to help, please don't hesitate to give us a shout  :)
  • Richard_Scope
    Richard_Scope Posts: 3,763 Cerebral Palsy Network
    Hi @mimiof4
    I great to have you join is on the community. I live with CP too, we do get our fair share of aches and pains, don't we? I'm sorry to read that you are experiencing an increase in pain. 

    You are not alone feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels.   

    Us CP folk use up a lot more energy than non-CP people, up to 5 times more because of the way we move or walk etc, this can lead to fatigue.  

     
    The key is learning about your body and planning your day around that as much as you can. Plan the bigger tasks at the time you have the most energy etc.  There is also something called Post-Impairment Syndrome that is related to CP this refers to additional conditions that might be acquired by someone already living with CP. Here is an excellent blog post about it:  
    What Post-Impairment Syndrome Means to Me  


    What I would advise is that you book an appointment with you your G.P. (telephone appointments will work too) and talk to them about how your CP has changed. And getting a referral to a neurologist or neuro-physiotherapist. You can mention the CP Care Pathway which instructs G.P.s how and when to refer.  
      
    I'm pretty much always around if you would like to talk further. We're here to support one another. Don't feel alone. 

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