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mandy46mandy46 Posts: 30Member Connected
Hi I'm Amanda and I'm new to the scope site.

Replies

  • Neil2017Neil2017 Posts: 158Member Courageous
    Hi Amanda

    and welcome to the Scope community. How are you? Hope you’ve had a good Christmas? And doing ok.
  • mandy46mandy46 Posts: 30Member 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. 
  • JennysDadJennysDad Posts: 2,308Member Pioneering
    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
  • mandy46mandy46 Posts: 30Member Connected
    Thankyou RichardVR 
  • Neil2017Neil2017 Posts: 158Member 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
  • steve51steve51 Posts: 5,879Community champion 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???? 
  • mandy46mandy46 Posts: 30Member Connected
    Thankyou steve51.
    It's nice to know that there are people to talk to.
  • steve51steve51 Posts: 5,879Community champion 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??????
  • AlexAlex Posts: 1,325Scope Team Scope community team
    Hi @Mandy46,

    Welcome to the community!
  • mandy46mandy46 Posts: 30Member Connected
  • Neil2017Neil2017 Posts: 158Member Courageous
    Hi @mandy46 hope you are well
  • mandy46mandy46 Posts: 30Member Connected
    Neil2017
    No I'm not tbh......I'm not coping with my pain anymore.
  • steve51steve51 Posts: 5,879Community champion 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?????

  • mandy46mandy46 Posts: 30Member 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.
  • AlexAlex Posts: 1,325Scope Team Scope community team
    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?
  • steve51steve51 Posts: 5,879Community champion 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.
  • mandy46mandy46 Posts: 30Member 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.
  • steve51steve51 Posts: 5,879Community champion 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.

  • mandy46mandy46 Posts: 30Member 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.
  • steve51steve51 Posts: 5,879Community champion 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!!!!!  
  • mandy46mandy46 Posts: 30Member Connected
    Steve51

    Yes that's what the pain clinic wanted to do. Even my gp said that it wouldn't work. I apparantly cry in my sleep with the pain so taking me off my pain killers wouldn't work.
    Thankyou about my Pip. That's one less stress off my mind.
  • steve51steve51 Posts: 5,879Community champion Disability Gamechanger
    Hi @mandy46

    Thanks for the reply: Yes I have got that “t-shirt” as well.

    They also had great idea with me a few years ago.

     I was told to come off my “Pregabaline” this took 3mnts as I’m on the max !!!

    ”Opps”

    “Hit the Roof”

    It took 3mnts to go back on them.

    6mnts off “Hell”

    Yes “Stress” is a “No-No”
    with “Pain”

    Please please let me know if I can help you with anything????
  • mandy46mandy46 Posts: 30Member Connected
    Steve51 
    I was on Gabapentin 900mgs 4×a day sleeping tablets amatriptaline...I was as high as a kite.. 
    They began to not work as my body got used to them so now I'm on morphine.
    All I want is for a surgeon to fix me from my neck down.
  • steve51steve51 Posts: 5,879Community champion Disability Gamechanger
    Hi @mandy46

    Thanks,  “wow” yes me as well I have been all around the country.

    Too 4 pain clinic’s who have all said the same with my meds.

    They have all wanted me too have treatment that the nhs will never “fund”

    Not in my “lifetime” anyway !!!

    How are you this morning???
  • mandy46mandy46 Posts: 30Member Connected
    Steve51

    Hope your comfortable today.
    Me..well.....in agony as usual lol....most frustrating I used to be so fit would walk for miles....swim..etc now I have trouble walking around my own home.
    I'm hoping my mri brings light to what's happened at L3 and if it has gone they can decide what to do 
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