Hi, my name is EDD! — Scope | Disability forum
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Hi, my name is EDD!

EDD
EDD Member Posts: 4 Listener
Hi I have suffered with polio all my life realise there was more severe people than me with polio.
Recently I have been noticing a big change in my ability to do things where are used to do loads of things now I do a lot less, I've always suffered with aches and pains but have been reluctant to have medication at any time I was told when I was 17 I would be in a wheelchair at 40

I am 63 now but I've noticed the last 12 months loads of things I used to be able to do I cannot do now and I'm suffering with lots of muscular problems.
Recently someone said to me you are suffering with PPS I didn't realise this until I read a few things online and what people were saying regarding their symptoms were very similar to me when telling my doctors this if you can get even an interview with your doctor I just offer you medication.
I also didn't realise for all these years I could've applied for PPI trying to apply for that now but they don't seem to recognise even though I have had a disabled badge for many years

Someone suggested I should join this group and see if others are having similar or same problems I will say I am dyslexic cannot read and write and a computer generates the words for me so if there's any spelling mistakes I apologise in advance.

I have not read anyone else's problems yet thought I would outline why I have joined this group

Comments

  • janer1967
    janer1967 Member Posts: 16,509 Disability Gamechanger
    Hi and welcome to the community Feel free to join in or ask any questions 

    Good luck with your PIP claim hope it is successful 

    As we get older the aches and pains appear but hope others can help with the same condition you have 
  • EDD
    EDD Member Posts: 4 Listener
    Thank you very much I am just trying to find out if there is others like me I'm normally not talkative to anybody regarding my health issues, recently I have been depressed for no real real reason's more for my aches and pains have got worse and the lack of interest in my sport, which is really unusual for me thank you anyway janer


  • Cher_Inactive
    Cher_Inactive Posts: 4,400 Scope online community team
    Hello @EDD and a warm welcome to our online community.  It's great you found us and thank you for telling us some more about yourself.  How has your weekend been?

    I'm sorry to hear your moods taken a bit of a dip recently, would you feel comfortable talking to your doctor about it?  I realise it's hard to get appointments for many people at the moment but if you ever feel like you are getting down and it's impacting your everyday life, do give that some thought.

    Also, you mentioned thinking you have PPS?  Excuse my lack of knowledge, but I wasn't sure which condition that was!  Would you be able to fill us in?

    For help with your PIP claim, feel free to post in our PIP, DLA and AA category and ask any questions. If you think it might be beneficial, you can also get free independent advice from trained welfare advisors by visiting the Advice Local website and entering your post-code, selecting 'Welfare benefits' from the drop down list and finding respective contact details on the next screen.

    In the mean-time, please do have a browse around our community and familiarise yourself with the place some more :)  Some nice starting points are our different chat categories and our virtual coffee lounge which is where we all get together to talk about bits of everything.

    Take care and I look forward to speaking some more again.
    Online Community Co-ordinator

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  • EDD
    EDD Member Posts: 4 Listener
    Thank you very much for replying to my post sorry for not clarifying PPS PPS is Post polio syndrome I am not a doctor but I read somewhere it was to do with the deterioration of the muscles after 30 years of having polio and all the symptoms state this is what's happening to me still can't get the doctors to investigate it at the moment due to the pandemic.
    I have looked at the PIP Dla and AA I have took myself assessment and scored 21 but the advice that I have read tells me to go for an appeal and asked for a medical face-to-face for many years I have not realised I'm entitled to this and it would've been helpful for the things I have to do on a daily basis.
    I would rather not talk to my doctor regarding my depressive state at the moment due to the fact I need to work to pay my bills and do not want to be described any medicine regarding depression 
    Because it will go against me working I only work 32 hours a week that is enough to survive but clearly I need more to survive but physically can't do more, I am an agency driver and do not do any physical work I operate a crane so if I'm on high medication I cannot operate these machines as I own my own house I will not be entitled to any unemployment if I am it would be very minimal and could not survive on that.

    Over the next few days I will look through the forums and check things out thank you for replying

  • Tori_Scope
    Tori_Scope Posts: 9,682 Scope online community team
    Hi @EDD :) Yes, according to the NHS website the symptoms of PPS can include:
    • persistent fatigue (extreme tiredness)
    • muscle weakness
    • shrinking muscles
    • muscle and joint pain
    • sleep apnoea
    I'm sorry that you've been struggling to see a doctor about it. Is it your GP you're trying to get in touch with, or have you been referred to another doctor? I know that getting an appointment can be tricky at the moment.

    Not everyone will get awarded the same score they get on a self-assessment, as you're likely to score yourself differently to an assessor. I'd definitely encourage you to submit an MR if you haven't already and believe that you're entitled. 

    Medication isn't right for everyone, but I'd encourage you to discuss your options through with your GP. They can't force you to take medication in that way, and may be able to make other suggestions. Have you considered talking therapy? If you live in England and would prefer not to go through your GP, you can self-refer for therapy through the IAPT service. 
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  • EDD
    EDD Member Posts: 4 Listener
    HI TORI
    Thank you very much for your advice I had a telephone conversation with my GP this morning he doesn't understand what PPS is even questioned if I had polio as a child because he couldn't be bothered to read my notes clearly

    When I explain to him I have had many MRI scans over the years going back to their 70s when they was not on microfilm there was like an x-ray, he questioned my own knowledge of this which I found very strange but clearly he doesn't want to read back through my notes and this is what I've had for many years they tend to treat you for your arguments and ate some pains with medication when you get the medication you have to take another medication cause the side-effects from that first medication at one stage I was on eight tablets a day found out only need three the rest of them were purely for side-effects.

    I have contacted some neurologist today to in London and tried to contact Kent and Canterbury Hospital so far not one has returned a call and this is what I get all the time after a while you just give up which is frustrating.

    You suggested therapy therapy is I believe for something that someone thinks happening that's not happening I don't need therapy for my muscles that are deteriorating and my bones also if you are referring to my mental state at the moment I'd rather leave therapy alone I hope that's what you was talking about.

    I just thought this group might have other people like me have this problem and I obviously do get the problem of appointments with doctors they seem to be over the telephone like my PIP appointment was a telephone conversation and I quoted of the appointments I had for CT scan and waiting for an MRI scan regarding my condition and they reported that I am not taking any medication and not following out any further appointments for my complaint again I clearly didn't listen to what was said

    Thank you anyway for your voice I shall keep on going for another couple of weeks if not then I think I will just give up because it's ridiculous that no one seems to understand what's going on NHS or otherwise and I'm not and I contract I work and I try to do things but just struggling a lot more lately thank you

Brightness

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