Pain, stiffness, weakness and feeling sad. — Scope | Disability forum
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Pain, stiffness, weakness and feeling sad.

AmyLouise
AmyLouise Community member Posts: 4 Listener
I am 26 years old and I have cerebral palsy. For a month now I've been struggling with pain, aching, stiffness and weakness. Every day is such a struggle. I have been feeling low, constantly been teary, anxious and just generally feeling absolutely overwhelmed with everything. I have just got told about this website today by my Nana, it made me smile seeing all of the support everyone gives each other on here. I don't want to be a burden but I just really need some help. 

Comments

  • AmyLouise
    AmyLouise Community member Posts: 4 Listener
    edited September 2023
    I am 26 years old and I have cerebral palsy. For a month now I've been struggling with pain, aching, stiffness and weakness. Every day is such a struggle. I have been feeling low, constantly been teary, anxious and just generally feeling absolutely overwhelmed with everything. I have just got told about this website today by my Nana, it made me smile seeing all of the support everyone gives each other on here. I don't want to be a burden but I just really need some help. 

  • Sandy_123
    Sandy_123 Scope Member Posts: 43,877 Disability Gamechanger
    Hi @AmyLouise welcome to the forum.  I'm sorry to read you are struggling lately, have to been to your gp to see if they can advise anything?
    Join in with the conversations on the site always someone to natter to here. 
  • AmyLouise
    AmyLouise Community member Posts: 4 Listener
  • chiarieds
    chiarieds Community member Posts: 15,879 Disability Gamechanger
    Hi @AmyLouise - & welcome to the community from me too. Good for your Nana in mentioning Scope, where there's lots of info about CP, & I'm sure @Richard_Scope for one will help if at all possible; thank you Richard.
    On Scope there's a category for CP: https://forum.scope.org.uk/categories/physical-impairments-and-cerebral-palsy, where one of the most important posts there (I feel) is one Richard made about what's called Post Impairment Syndrome. You can read that here: https://forum.scope.org.uk/discussion/56078/post-impairment-syndrome-and-cerebral-palsy/p1
    There's also some info on Scope's main website such as: https://www.scope.org.uk/advice-and-support/ageing-and-cerebral-palsy/#Problems-people-with-CP-report-as-they-get-older-click    not that I'm suggesting you're old! :)
    I hope you have a look around at all the info, & you're absolutely not a burden to anyone here, would just like to see you get the help you need.
  • AmyLouise
    AmyLouise Community member Posts: 4 Listener
    Thank you so much for your lovely reply! It's really made me smile! I'm definitely going stick to your advice and check out all the info on CP! It's really made me feel like I have hope now. Thanks for being so kind. I certainly want to stay on this online community too because it's nice that I can talk to people that face the same problems I do, are in similar situations or just generally it's nice being able to speak to many people on here. It's nice that everyone can support each other. 🥰
  • chiarieds
    chiarieds Community member Posts: 15,879 Disability Gamechanger
    And thank you for your kind words @AmyLouise - I specialised in treating babies & young children with CP as a physio; I also saw some young adults with this. I've always been interested in all things neurological (just as well as this is the main problem in my family!), & have learnt a lot from Richard about the problems adults with CP face since joining Scope 4 years ago.
    We have some lovely members, & whatever disorders we have, I feel there's so much understanding & support here. I really look forward to seeing you around the forum. :)
  • Hannah_Scope
    Hannah_Scope Posts: 7,267 Disability Gamechanger
    edited September 2023
    Hello @AmyLouise

    Welcome to the community! :) 

    I'm so sorry to hear that you have been struggling. Please don't feel like a burden, you are not one and we are all here to help anyway we can :) I see @Richard_Scope has been tagged. He is our Cerebral Palsy Programme lead. We also have a CP Network, who hold online meetings and get togethers. I'll tag @Abdi_Scope if you would like to join in with that :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Richard_Scope
    Richard_Scope Posts: 3,615 Scope online community team
    Hi @AmyLouise
    It is great to meet you! I see that you have already been given some links to our CP information. 

    You are not alone in 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.    

    We 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 I would advise is that you book an appointment with your GP (telephone appointments will work too) and talk to them about how your CP has changed. And get 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 to UCLH Cerebral Palsy Service. You may also want to consider a referral to the Bobath Adult CP review service that was created with the support of Scope. 

     
    If you would like to talk more, drop me an email or find me in the community. 

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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