Cerebral Palsy
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Hi, can cerebral palsy get worse suddenly?

GWyntonGWynton Member Posts: 3 Listener
This is something that's been bugging me for a long time now; I've managed my CP very well for the majority of my life, to the point where it barely challenged me at all, but since the age of 16 (I'm 19 now) I've suddenly been experiencing extreme pain and fatigue and I don't know what's happening. I know that CP technically can't get worse because of the damage can't progress but I know about post-impairment syndrome and things like that. However, I assume that these things occur slowly and progress over time, but for me, pain and fatigue has been sudden and intense and so not a lot has helped. I'm back in physiotherapy now and am using an EFS to ease the pain and fatigue when I walk, but I'm struggling to understand why things have gotten so bad so quickly. Can anyone help me?

Replies

  • poppy123456poppy123456 Community champion Posts: 20,514 Disability Gamechanger
    HI and welcome,

    I'm a community champion here on scope. Unfortunately, we are not medical professionals and are unable to give you any medical advice. For this reason i will advise you to speak to your GP and hopefully, he/she will be able to advise you.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Ami2301Ami2301 Community champion Posts: 6,805 Disability Gamechanger
    Hi @GWynton and welcome to the community! Have you talked with your physiotherapist about your concerns?
    Community Champion
    Disability Gamechanger - 2019
  • GWyntonGWynton Member Posts: 3 Listener
    @Ami2301 sort of, I've been concerned about this for a long time and when describing my sensations and pain level history my physio was concerned that it's got extremely intense so quickly, so she's aware of it and has told me to see a neurologist about it (which I will) but I just wanted to see if this was a ting experienced by others and if I should be scared of it, whether it's possible this is just a reaction to something, or something that is a natural part of CP that progressively gets worse 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,559 Scope community team
    Hi @GWynton and a very warm welcome to the community. I too have CP and experienced exactly what you have described. I wore AFO splints as a child and then wasn't wearing them by the time I was 15 years old. When I turned 18 I started wearing them again and saw a huge benefit. I'm now 21 years old and continue to benefit from this.
    I'm not saying this will help you, more to illustrate that I too experienced changes in mobility, pain and fatigue. Keeping physio going and being as mobile as possible will benefit your muscles. You mentioned Post-Impairment syndrome, you may find this article beneficial to read.
    I also am tagging @Richard_Scope who is our Cerebral Palsy specialist. :)
    Community Partner
    Scope

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  • Richard_ScopeRichard_Scope Administrator Posts: 2,323 Scope community team
    edited November 2019
    Thanks for tagging me @Chloe_Scope
    Great to meet you @GWynton and apologies for me being late in joining the conversation. You are absolutely correct that the neurological basis for our impairment does not get 'worse'. However, due to the way we move and the stresses and strains placed on our joints we can experience what has been termed physiological burnout. This basically means that ankles, knees, hips etc are prone to experiencing pain. This can be managed through physiotherapy and orthotics (AFO splints) and staying as fit and active as you can manage.
    The tiredness that you are also experiencing could be your CP as we burn 3 to 5 time more energy than non-CP people. With fatigue, I would always be cautious and mention it to your G.P. just to investigate for any other reasons for the tiredness before we blame it all on CP. Again, if CP is the cause of the fatigue this can be managed by planning workloads and activity and remembering that rest days are important (something I'm terrible at).
    Please try not to worry. We're here to support you :) 
    Scope
    Specialist Information Officer - Cerebral Palsy

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  • WestHam06WestHam06 Community champion, Scope Volunteer Posts: 680 Pioneering
    Hi @GWynton
                           Welcome to the community, thank you for joining us. I too have CP and can relate to what you are experiencing. I agree with @Richard_Scope and @Chloe_Scope keep going with physio as this will definitely help in the long term. Please do speak with your GP regarding your fatigue as it is important to make sure everything is as it should be because as at @Richard_Scope said you do not want to just automatically blame CP. From personal experience, this is not helpful and GP's are there to support you and ensure you are well to be able to navigate day to day life and do the things you want to do. Though I appreciate this is hard, please try not to feel scared and if you ever need to talk there will always be someone on the community ready listen. Thank you. 
  • GWyntonGWynton Member Posts: 3 Listener
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