New — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

New

mandy46
mandy46 Community member Posts: 30 Connected
Hi I'm Amanda and I'm new to the scope site.
«1

Comments

  • Neil2017
    Neil2017 Community member Posts: 155 Courageous
    Hi Amanda

    and welcome to the Scope community. How are you? Hope you’ve had a good Christmas? And doing ok.
  • mandy46
    mandy46 Community member Posts: 30 Connected
    Hello Neil2017
    Christmas wasn't too bad thankyou. Shame I can't have a few days off pain over Christmas lol.
    Hope yours was good. 
  • JennysDad
    JennysDad Community member Posts: 2,299 Disability Gamechanger
    Hello @mandy46. Just adding my welcome to the community - good to have you aboard. You'll find you are among friends here.
    Very best to you
    Richard
  • mandy46
    mandy46 Community member Posts: 30 Connected
    Thankyou RichardVR 
  • Neil2017
    Neil2017 Community member Posts: 155 Courageous
    Hi @mandy46
    For Christmas you could say god only knows.

    That’s a detailed description of the causes of your pain - wonder where you could’ve got that from.

    Have as good a day as possible
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi @mandy46

    Good Evening & Welcome to our community.

    It’s great to meet you today.

    Please please have a good look around.

    If there is any help/support that I can help you with please let me know???? 
  • mandy46
    mandy46 Community member Posts: 30 Connected
    Thankyou steve51.
    It's nice to know that there are people to talk to.
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi @mandy46

    That’s no problem at all.

    It’s my pleasure !!!!!!

    Please please let me know if there’s anything that I can help you with??????
  • Alex
    Alex Posts: 1,305 Pioneering
    Hi @Mandy46,

    Welcome to the community!
  • mandy46
    mandy46 Community member Posts: 30 Connected
  • Neil2017
    Neil2017 Community member Posts: 155 Courageous
    Hi @mandy46 hope you are well
  • mandy46
    mandy46 Community member Posts: 30 Connected
    Neil2017
    No I'm not tbh......I'm not coping with my pain anymore.
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi @mandy46

    Good Morning!!!!!!

    Please please let me know if I can help you with in regards to “Pain”

    I have become an expert with mine as I have had it for 13yrs now.

    No help from the “NHS”

    The “Consultant’s” keep telling me I need “DBS” but the “suit & tie brigade” keep saying “NO FUNDING”

    “Great”

    Please please let me know if I can help you further?????

  • mandy46
    mandy46 Community member Posts: 30 Connected
    Hi Steve51.
    I've had pain in my spine since I was 15 I'm now 46. It's was eased by spinal fusion but never 100% clear of pain. My ex beat me on the back of the neck prolapsing 3 discs just touching my spinal cord.
    I had a disc at l3 which was looking height....apparantly after losing my balance I fell and now I'm told I've lost that disc right above my fus ion. My pain in intolerable I'm not coping.....sometimes I wanna just die and be free from it. Morphine 60mg don't ease it.
  • Alex
    Alex Posts: 1,305 Pioneering
    Hi Amanda,

    Welcome to the community. Sorry to hear about the pain. We have a category on here about dealing with chronic pain that you might find interesting?
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi @mandy46

    I’m very very sorry to hear that you are having a difficult time at present.

    Please please let me know if I can help you in anyway???

    Yes my pain is shocking at the moment I have been told over the last few years that my only treatment left is”DBS”

    But the lovely “NHS” won’t “Fund” the “Treatment” 

    “Great”

    I have been taken off my “Morphine Patches” I have been given even “Stronger Patches”

    ”Still No Use”

    Sorry for going on !!!!!!!!

    Please please let me know if I can help you further  ?????

    Thanks.
  • mandy46
    mandy46 Community member Posts: 30 Connected
    Hi Steve51
    I dunno what to do. I'm an emotional wreck. 
    My morphine isn't working 100% I'm absolutely knackered and falling asleep but I still feel the emence pain in my spine so I'm not really resting.
    Im worried about Pip.  With all the news going around that they're just stopping people's pip without really understanding someone's problems is worrying me.
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi @mandy46

    I’m so sorry to hear that you are having such problems with your “pain”

    Sorry to be a pest but are you currently being seen at a “pain clinic” ???

    I have been given a “stronger patch” for my pain
    but as my pain is down to “nerve damage” these are no better to be honest.

    I try to keep away from “stress & worry” this works well for me.

     Don’t worry about “Universal Credits”

    We have got lots of info on them so we can “tackle” those when the “time” comes if that’s ok??  

    Many thanks.

  • mandy46
    mandy46 Community member Posts: 30 Connected
    Hi Steve51
    Pain clinic was suggested but they wanted me to go there have my pain medication taken off me and have me to learn about getting used to pain mentally. As this is not an option that wasn't s good idea.
    I had a phone call this afternoon off a lovely lady from Pip informing me that as of from today I'm bring put on the higher rate for both for the next 5 years.
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi @mandy46

    Many many thanks!!!!

    Is that what the “pain clinic”
    wanted to do????

    Mind you my “pain clinics x4” want me to have “Deep Brain Stimulation” 

    The “NHS” will never ever use “DBS” in my “Lifetime” anyway!!!!!

    ”Cop Out” comes to “Mind”

    Thats great news with your “PIP”

    Please please let me know if I can help you further!!!!!  

Brightness

Complete our feedback form and tell us how we can make the community better.