Hi, my name is Fran

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fclabon
fclabon Online Community Member Posts: 1 Listener
in Start here and say hello!
Hi Scope people, I'm Fran. I recently discovered this website trying to get through the tedium of universal credit applications and thought I would join as it seems to have a lot of information relevant to my issues. I have chronic pain caused by fibromyalgia and also epilepsy which has severely affected my abilities to function in most employment situations as I can't stand for long periods of time and have issues with memory and cognitive function from the seizures. 
If anyone has any advice for these issues in particular, whether that be coping mechanisms, medication recommendations, physiotherapy or help with universal credit, I would be so incredibly grateful as I am currently in debt to my bank and am running out of ideas. 
Best wishes to you all

Comments

  • Adrian_Scope
    Adrian_Scope Posts: 11,754 Online Community Programme Lead
    Hi @fclabon and welcome to the community.
    There are many knowledgeable folks on the community who should be able to share their experiences and hopefully even advise about some of the issues you've mentioned.
    Is there anything in particular you need help with? :)
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Welcome to the community @fclabon! :)
  • Ails
    Ails Online Community Member Posts: 2,237 Championing
    Hi @fclabon and welcome to the Community.  How are you today?  It's nice to meet you.  I'm really sorry to hear about your present situation and your health issues and can appreciate that all of this must be extremely stressful for you.  Just want you to know that we are all here for you on the forum and will support you all we can.  There are some members of our Community who have Fibromyalgia, chronic pain and Epilepsy and as @Adrian has already said, they may well want to share their experiences with you and give you some advice.  You will certainly never be alone on here as there are so many lovely people all willing to chat to you and lend a listening ear.

    I suffer from pain a lot of the time and would recommend a Pain Management Clinic as a means to help manage pain.  Your GP can refer you to your nearest clinic once the lock-down has eased.  Physiotherapy is also very good, of course.  

    I'm glad you have found us and hope you have found the information on the site to be helpful.  I look forward to seeing you on the Community and hope you enjoy being with us.  If we can be of any help/support to you then please just let us know.  All the best.  :smile:
  • chiarieds
    chiarieds Online Community Member Posts: 17,127 Championing
    Hi @fclabon - Welcome to the community from me too, Fran. I have Ehlers-Danlos Syndrome (EDS), which is a genetic disorder. I read a little while ago, as I try to keep up to date on relevant medical research, that the pain in those with the hypermobile type of EDS, which I have, is most similar to that of people with fibromyalgia. So I do have a little understanding as far as that goes.
    I'm also a physio, tho I haven't worked as such for a very long time. There are some physio exercises in the following link, with videos showing how to do them. Please look through them, to see what might be appropriate for yourself. I would recommend including the 'knee extension strengthening,' or Quads exercise, & 'Straight leg lift/raise,' as somewhere to start. With any exercise, take it slowly, & build up gradually. Please see: https://www.csp.org.uk/public-patient/keeping-active-healthy/exercise-advice-videos
    As you might gather, as far as coping methods go, I would always put exercise first. It also helps release endorphins in our bodies, which makes us feel a little better. However, there isn't just one answer, & sometimes it's a combination of things that may help. Whilst I'm grateful for my physio training, which has undoubtedly helped me, I also use distraction methods (whatever you like; for me it's reading, listening to music, watching films, or being out in the garden...especially just now), visualisations & mindfulness. It's unfortunately a bit of 'trial & error' finding what's going to work for you.
    As far as your debt goes, try https://www.stepchange.org/
    If you're having problems with Universal Credit, or have a question about it, please say, as the Scope team will be able to advise.
    As Adrian, & Ails have said, there are also people here with epilepsy, who may share their experiences too.
    I hope some of this helps; please let us know, thank you. :)


  • LouiseH
    LouiseH Online Community Member Posts: 96 Contributor
    Welcome @fclabon hope you are well. Have you looked at any other benefits that you might be entitled to?
    https://www.scope.org.uk/advice-and-support/calculate-your-benefits/

    I'm wondering if you might be entitled to PIP or ESA?

    I hope this might help and maybe open up some further avenues for you.

    Best wishes 
    Louise :smile:

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