Dealing with chronic pain
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angry with my G.P + C.C.G they are lowering my meds

loopy_louloopy_lou Member Posts: 11 Listener
edited November 2018 in Dealing with chronic pain
Hi everyone feeling angry with my G.P + C.C.G they are lowering my meds apparently they are shutting all the west essex pain clinics I've been on fentanyl patches since 2001 now any body who's on opiates are to be taken off but they haven't even offered me anything as a substitute so feeling down as you can imagine pains going to get worse + I don't no where to turn been to citizens + rang pals 

Replies

  • Ami2301Ami2301 Community champion Posts: 6,825 Disability Gamechanger
    Hi @loopy_lou welcome to the community!

    Sorry to hear this! Were Citizens Advice or PALS able to offer any advice?
    Community Champion
    Disability Gamechanger - 2019
  • topshoestopshoes Member Posts: 443 Pioneering
    Hi @ loopy-lou welcome , i sure someone will be on here to help you out .
  • loopy_louloopy_lou Member Posts: 11 Listener
    Not much citizens gave me number for essex health they sent me back to pals but pals works for c.c.g so I've hit dead end + thanks for answering new to all this not very good at sharing feelings! 
  • Ami2301Ami2301 Community champion Posts: 6,825 Disability Gamechanger
    This does sound really frustrating, my heart goes out to you!

    Our community is full of incredible and knowledgeable members and I am sure they will be in contact with you soon to offer support and advice.

    Its OK! We are a friendly bunch and we understand it can be daunting at first.

    Do let us know if we can be of any further assistance! :)
    Community Champion
    Disability Gamechanger - 2019
  • loopy_louloopy_lou Member Posts: 11 Listener
    Thank you I appreciate that x
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @loopy_lou

    Good Morning & it’s great to meet you today.

    How frustrating are they (gp + pain clinic)
    where are you based???


    I’m one off the “Community Champions” so please please let me know if I can help you further???

  • loopy_louloopy_lou Member Posts: 11 Listener
    Sorry what's a community champion ?
  • loopy_louloopy_lou Member Posts: 11 Listener
    What's a community champion + I'm based in Essex
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @loopy_lou

    Sorry for the confusion!!!!

    We monitor/look after the “Online Community” on behalf of “Scope”



  • loopy_louloopy_lou Member Posts: 11 Listener
    Oh ok thank you for replying still trying to work out what I'm doing not very good at this!
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @loopy_lou

    No probs!!!!

    Please please let me know if you would like me to show you around??????
  • loopy_louloopy_lou Member Posts: 11 Listener
  • Ami2301Ami2301 Community champion Posts: 6,825 Disability Gamechanger
    Have you read our how-to community guide? It helps to give you an idea about how the online community works :)
    Community Champion
    Disability Gamechanger - 2019
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @loopy_lou

    “No probs”I will get to it straightaway if that’s ok???


  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @loopy_lou

    Sorry to ask but is there anything specific that you want me to start with?????


  • loopy_louloopy_lou Member Posts: 11 Listener
    How would I go above the c.c.g to find out the apparent research they have done on opiates if that's ok thank you again x
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @loopy_lou   Pleased to meet you . Sorry what has happened.

    Understand your having problems with your treatment and may I ask have you spoken to your Practice Manager first.

    About your treatment or even your Doctor. If you feel you are hitting a brick wall and no one is listening to you.

    You perhaps need a advocate to represent you.

    There are several ways to look for one.  If you look on the website NHS one you will see a range of services.

    Look under Advocacy.  A advocate is some one that represents you in your treatment or care. Speaks on behalf of you. Either in Doctors and other medical professionals.

    There are not councillors, therapists but you in agreement and consultation can discuss how they can help you together, using what you wish them to say.

    Local Health watch on the NHS website has a complaints procedure if you wish to look at that.

    Sorry if this is a lot to take in.

    I am the same as @steve51 and @Ami2301 I am also a community champion.

    Of the SCOPE website.

    Hope that helps.

    Please ask if we can advise further.

    Pleasure to meet you.

    Take care

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • loopy_louloopy_lou Member Posts: 11 Listener
    That's really kind of you thank you very much  your an  o:)
  • steve51steve51 Community champion Posts: 7,175 Disability Gamechanger
    Hi @loopy_lou

    “No Probs”

    Please please keep me in “mind”
  • WaylayWaylay Member Posts: 890 Pioneering
    @steve51 Would love to hear about your research on opiates! Scared, as this seems to be happening moire and more...
  • ellie_maeellie_mae Member Posts: 23 Connected
    I have also been advised by my GP that opiates have lost their licence for use long term for managing pain and now can only be used short term. Research apparently shows opiates lose their effectiveness long term and other medications have proven more effective for long term use.
    He advised me off the record, so to speak, that actually so many people are now sueing Go's for opiate addictions, prescribing of these drugs has become untenable.
     So this is a national ban, not just local.


  • WaylayWaylay Member Posts: 890 Pioneering
  • loopy_louloopy_lou Member Posts: 11 Listener
    Thank you for this information it wouldn't have felt such a blow if this was explained properly + if the G.P actually offered another medication for the pain but I've not been offered anything how do they expect people like us in this situation to cope on a day to day basis who's in severe or chronic pain without a substitute from the opiates 
  • ellie_maeellie_mae Member Posts: 23 Connected
    I am now on Gabapentin, which is a Neuro blocker, it seems to be doing ok for me in combination with my other meds. It may need a bit of tweaking but overall I am managing.
    Having said that I appear to have a pretty high pain tolerance level as I was hobbling around with my hip socket detached and up in my pelvis for several years undetected. It was when my femur joined the socket that I was finally  hospitalised.
    Like you I have a combination of pain inducing issues,mostly arthritis but also damage to nerves in both back and thigh and severe degeneration of every bone in my left foot
    You are not alone and I hope this helps.
  • loopy_louloopy_lou Member Posts: 11 Listener
    Oh gosh you've defiantly got a high  tolerance of pain mine is rubbish I'm also in my late 40's I had prolapse disc that basically  exploded damaging my sciatic nerves can't walk drag my left leg like it's concrete I have this dull constant ache in my spine I get these lightening  bolts that are so painful it makes you feel sick I'm on a nerve  blocker as well pregablin I've also had 6 lots of spinal injections over the past 7yrs they was nerve blockers too but they wasn't any help then I was told there's nothing eles they could do for me apart from manage the pain best they could but you try + get through each day the best you can I'm so sorry for what you have been through I wish you hopefully less painful days + thank you for sharing with me I appreciate your help x
  • WaylayWaylay Member Posts: 890 Pioneering
    Oh God. So scared now. 

    @loopy_lou , your condition sounds very similar to mine, except that I don't drag my leg much, but I do get horrid back spasms...
  • WaylayWaylay Member Posts: 890 Pioneering
    @ellie_mae
    I take over-the-counter meds, venlafaxine at max dose, lamotrigine (some effect on chronic pain) and gabapentin. I've had an epidural, multiple sets of facet joint injections, and a radiofrequency denervation, multiple courses of physiotherapy, osteopathy, chiropracty, medical massage, hydrotherapy, occupational therapy and have been in a long-term pain management programme. I also use relaxation exercises, mindfulness, stretching, pacing, heat, TENS, etc. etc. 

    Even with all that, I end up having to take tramadol 1-7 days a week, sometimes reaching the max dose/day, owith ral morphine if tramadol isn't enough, diazepam/clonazepam for serious spasms, CBD, pot, and very occasionally (when desperate) a couple of shots of booze. Without the tramadol/morphine and benzos, I'd be homebound most of the time, bedbound and/or in serious pain much of the time, and in agony some of the time. A&E, here I come.

    I was on codeine for 6 years (w/ benzos), then tramadol/morphine and benzos for 4 years. I only switched from codeine to tramadol because the codeine wrecked my stomach, and I was ending up at A&E multiple times/year because codeine wasn't controlling the pain of my severe spasms. I've never increased my dose, only ever asked for a prescription early when travelling, going through benefits f*ckery (mental health gets really bad which makes the pain worse), and once when I somehow lost the box of tramadol. It works the same way for me that it always has.

    I'm a researcher, but in this case, bollocks to the research! Opioids keep working for some of us long-term.
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