Hi, my name is Emmz86 looking for advice on increased pain as a adult — Scope | Disability forum
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Hi, my name is Emmz86 looking for advice on increased pain as a adult

Emmz86
Emmz86 Community member Posts: 3 Listener
edited May 2021 in Cerebral palsy
Hi! I'm new here. 
I have CP and have recently noticed a big decline in my mobility, the trips and falls have increased as has the pain, mostly in my hips and ankles. I recently visited my GP and she has referred my for physiotherapy. 
I haven't had physio since I was a child and I'm interested to know what others also  found helpful. 
Thanks 

Comments

  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi and welcome to the community 

    We have a cp section which you may find some useful info 

    There are quite a few members here with cp so hope they can help 
  • chiarieds
    chiarieds Community member Posts: 15,884 Disability Gamechanger
    Hi @Emmz86 - Welcome to the community & thank you for joining. Scope has some info on problems those with CP can suffer: https://www.scope.org.uk/advice-and-support/ageing-and-cerebral-palsy/Here's the section of posts about CP mentioned above: https://forum.scope.org.uk/categories/physical-impairments-and-cerebral-palsy
    You might also like the CP online cafe for those 20+ Please see: https://forum.scope.org.uk/discussion/73129/our-next-welcome-cafe-is-monday-14th-of-december-4pm-until-5-30pm
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Hello @Emmz86 and a warm welcome from me too :)

    I've moved your thread to our Cerebral Palsy category which you might like to browse as it contains others stories and experiences of living with CP.  I'm also tagging in @Richard_Scope who is our resident CP information specialist so he can offer some advice the next time he's about on the community.  

    I hope the physio is therapeutic for you and goes well, so please do keep us updated with that.  Best wishes.   
    Online Community Co-ordinator

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  • Emmz86
    Emmz86 Community member Posts: 3 Listener
    Thanks for all the info, I'll take a look. 
  • Richard_Scope
    Richard_Scope Posts: 3,615 Scope online community team
    Hi @Emmz86

    It's fantastic to meet you. You are not alone feeling like this. Ageing with CP is a new challenge for sure. I have quadriplegic CP and you a wheelchair and since I hit 40, I have felt the changes in my mobility and energy levels.  
    As has been mentioned 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. . Whilst the neurological aspect of CP doesn't change, the physical aspect certainly does. 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. Ask for 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.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Emmz86
    Emmz86 Community member Posts: 3 Listener
    Hi @Richard_Scope thank you for all the helpful information. I have 3 young children and have noticed I was using the pushchair for some support when walking. Now that my youngest is 3 and using the pushchair much less I have noticed how much I need a little more support when walking and that I am now much slower than I used to be and the amount of trips and falls have increased. I do have a walking stick but I'm recluant to use it even though I know it would help. 
    I had an appointment with my GP a few weeks back and she made a referral to a physiotherapist for me so hoping that will help a little. 
  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    edited May 2021
    Hi @Emmz86
                           Welcome to the community and thank you for joining us. How are you? I can relate to what you are saying and physically CP definitely does change as we become older. I hope that the appointment with the physio goes well and there isn't too much of a wait, please do let us know how it goes if you feel you would like too. Please may I ask and please don't feel you have to answer, why are you reluctant to use the walking stick? The reason I ask is because I can relate to these reluctance too. I started to become less mobile in my teens and I was advised to use a stick due to increased falls. I initially refused and it took a long time and a lot of bumps and bruises to agree. I then had to use two elbow crutches and now mainly use a wheelchair. I think I was worried about what my peers might think of me as I think I related the words 'walking stick' to older people. The other thing that really helps now, which I refused to do then, is physio. Daily stretches to help to prevent muscles from becoming to tight as well as medication.  I hope this helps and please if you would like to ask any questions, do ask and I'm happy to try to answer. Thank you.
  • Richard_Scope
    Richard_Scope Posts: 3,615 Scope online community team
    Hi @Emmz86
    How are you doing?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

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