Welcome to our new group on dealing with chronic pain - Page 3 — Scope | Disability forum
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Welcome to our new group on dealing with chronic pain

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Comments

  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Yes she wanted to start by decreasing my pain meds ? 
  • Adrian_Scope
    Adrian_Scope Posts: 10,935 Scope online community team
    I can see why that would put you off! :D

    Community Manager
    Scope
  • WhileIBreathIHope
    WhileIBreathIHope Posts: 216 Pioneering
    my prescription comes in a carrier bag and two GP’s sign it off, but I’m out up and working again.
    today feels like 8 rounds with Mike Tyson 
  • cracker
    cracker Community member Posts: 324 Pioneering
    I cannot write much. I am using a Kindle because I am on embed and it takes forever to write anything.


    I read all the posts and share much of what we all are going through.

    Wish I could write more,will try to get to desktop tomorrow.

     Meanwhile, my heart goes out to everyone.
  • Adrian_Scope
    Adrian_Scope Posts: 10,935 Scope online community team
    Hope you're doing okay today @cracker?
    Community Manager
    Scope
  • mindful82
    mindful82 Community member Posts: 18 Listener
    Hi Mark Cumbria you should ask your doctor to refer you to either further investigation or ask to have an mri scan only then will you know I too kept asking loss the use of my legs one day I was sent home after they said nothing broken or fractured just major muscle damage I then asked after a few weeks of chronic pain after learning to walk by myself I was unable to sit up straight I was unable to walk normal I took a step with the left leg which then felt normal and dragged my right with my hands couldn't stand up straight either i asked for physiotherapy well they didn't want to know and I was asked whether I'd like further investigation oh yes please lol I said they on my first appointment asked whether I'd ever broke my hip I replied I'd know about that wouldn't I which the doctor said yes and I was sent for emergency mri scan because they thought x-ray had neglected me by sending me home with a fractured pelvis which in a way makes sense as a pelvis heals on its own over a period of 2 to 3 months but no that wasn't the outcome of my bank holiday mri scan it was permanent spinal cord damage and many other spinal problems vertebrae bulging out neck damage etc etc missing spinal cord fluid its a pain at times I am unable to manage I understand spinal damage living with it 24/7 I feel isolated because I prefer to be alone its easier on here its good like today I was on the phone on hold now I couldn't turn the volume down I was in serious agony and whilst on hold I kept hearing the same message over and over and over again I just ended the call any other time I'd be ok but not when my pain is beating me up as it does at times I've been laying still my pain is serious but manageable atm but I better not move I'll not move until I need the bathroom finding a comfortable position isn't easy I'd like to chat with anyone who lives with chronic pain I am a ceiling watcher I do laugh at things about my day its needed 
  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    Hey all. I too suffer from chronic pain. Always so much worse in the winter and dark months. Much as i wish we all were healthy its a comfort to know im not the only one feeling a bit lost as a result. I kinda feel that way atm. As iv been in a pretty bad way constantly since about nov with my latest flare ups. Just trying to get through it but find myself thinking really negative at the min. :-(
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
    Hello there @ricky1040 I'm sorry to hear you've been thinking negatively lately, as you say it can be much harder this time of year.

    You're certainly not alone either, and I'm sure plenty of our members can relate to finding things hard going with flare ups too. 

    Can I ask how things are in terms of pain management for you at the moment? Do you have a good support network around you?

    It might be a bit of a cliché but sometimes it really is best to take things one day at a time. Is there anything you're looking forward to later this year that you can focus on? :) 
    Online Community Coordinator
    Scope

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  • ricky1040
    ricky1040 Community member Posts: 121 Pioneering
    Hey. @Alex_Scope thanks for replying. I take pain relief and try and do light exercise to help and i have a wonderful family and great friends. 

    I just get really frustrated because in my mind i have all these things i want to be doing and goals i want to achieve but my body wont let me. 

    I know from previous years that i will get good times soon tho and i hold on to that. Just been quite a long flare this time and its driving me a bit mad. 

    Ill get there. Hope everyone else is doing on to. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
    That's okay @ricky1040 I'm glad you have good support around you and you're staying active too. 

    I can understand the frustration certainly, my body is often uncooperative too! It's helpful to hold onto good times, and maybe redefining your goals without any expectations could be worth a try.

    I think feeling like we aren't doing enough is a very common thing, especially for disabled people, and sometimes we end up battling ourselves, due to (sometimes unnecessary) pressure and expectation.

    How would you feel if there was no pressures or expectations?

    I have a feeling you're already been doing more than enough over the winter, so hang tight. As you say, you'll get there :) 
    Online Community Coordinator
    Scope

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  • Jo_2022
    Jo_2022 Community Volunteer Host Posts: 298 Pioneering
    Good evening all,
    I am deeply sorry to hear about everyone's pain and chronic health issues. My heart goes out to you all and I would like to send you all my heartfelt warmest wishes. Hope you all have a wholesome weekend!  <3     

    Community Volunteer Host with a passion for human rights.


    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

  • Glitterbug
    Glitterbug Community member Posts: 2 Listener
    Hi everyone, I also suffer with chronic pain and have done since 2017. Like many of you, alot of my friends have disappeared. I take gabapentin, cocodamol 30/500 and oramorph. I used to have fentanyl patches but had to come off them as I was so spaced and I need my brain for work. I work in IT, actually from my bed every day because I'm not mobile enough to get anywhere else and not working isnt financially viable! I claim Pip but only get basic rate and no mobility even though I use a wheelchair, have a blue badge, have scoliosis, pelvic asymmetry, spinal nerve damage and issues with my SI joints.  Don't get me started on that saga! Who can live on £200 a month? Is this any life at all? Who knew wheelchairs would be so uncomfortable, or the world so unadaptable? Anyway, nice to meet you all...I'm not all doom and gloom...but I do feel the vibe! Im a disabled working mum with 3 kids to support...it's tough out there but the bairns keep me smiling! 

Brightness

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