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In pain all the time

Hi 

I am new on here,  I have joined this group to see people’s discussions, how it effects them, and what to do to try and sort it or help it. 

Hopefully I will be able to learn and understand more.

Thank you 
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Comments

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @avakarlsson, great to have you here!

    Do you have anything that helps your pain at all? I find that heat is really good for me.

    If there is anything we can do to help then please do let us know! 
    Scope

  • avakarlsson
    avakarlsson Member Posts: 333 Courageous
    Hi Chloe, 

    I take strong pain relief that takes only a tiny bit of the pain away, but still chronic. I have tried heat patches and hot water bottle to see if that does help but it doesn’t. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @avakarlsson, have you ever tried a TENS machine or ice? These are other things that can help with pain.
    Scope

  • avakarlsson
    avakarlsson Member Posts: 333 Courageous
    Hi Chloe

    yes I have tried a tens machine, It wasn’t success I thought it might of helped but it didn’t, I am under pain management at the hospital and I also see my consultant at the same hospital to for my pain and my hip problem.
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @avakarlsson   Please have a look at this website might be useful.

    https://www.awaywithpain.co.uk.

    Please if I can help with anything else please ask.

    I am one of the community champions on the forum.

    Happy to help anytime.

    Please 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
  • avakarlsson
    avakarlsson Member Posts: 333 Courageous
    Hi 
    Thank you for sending me the link, I just want to be pain free as I’ve had it for a few years now 
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @avakarlsson   Pleasure to help you.

    Found this organisation helping another community member who has chronic pain.

    Must add anything else please ask me, happy to find out for you.

    Part of my role is to find anything else relevant and any thing else I suggest, advise and consider.

    Many illness, conditions, disabilities have organisations, charities, societies, associations related so have made a goal of mine to find these for members.

    Please I hope this website helps you.

    I have muscle pain for a large percentage of my life due to addiction, does happen so this was helping me as well.

    Might be worth another extra advice all Councils have Community Health Units, called Wellbeing service.

    One to one advice, guidance in improvements of health, diet and nutrition.

    Something I used myself self and gained qualifications.

    Use this with advising community members.

    Please just another idea to see how and what they can do to help you, maybe looking at everything from lifestyle to see if any thing additional can be done.

    Might help to maintain your condition and you can use the knowledge to manage any problems.

    Please 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
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @avakarlsson, sorry to hear you are struggling to find pain management that is working. Being in pain can be so frustrating and tiring. Is your doctor wanting to try different things? 
    Scope

  • avakarlsson
    avakarlsson Member Posts: 333 Courageous
    Hi 
    yes pain is chronic and makes me tired and when you have had it for such a long time it gets to you everyday and night always in pain and can’t sleep properly. 

    Yes I’m under a hospital who is dealing with my pain and hip they are doing a procedure soon for the pain and hoping that will work 
  • avakarlsson
    avakarlsson Member Posts: 333 Courageous
    It changes everything when you are in pain etc as you can’t do much or like me got a part time job which I love and I can’t go to work due to chronic pain 
  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    Hi @avakarlsson
    I'm sorry to hear you are experiencing pain and have done for a long time. 
    I think the key message that the NHS is starting to realise it needs to get across is that most people don't find painkillers effective when used long term, so it's important to try and find other ways to manage pain.
    You might find this website helpful:
    https://my.livewellwithpain.co.uk/
    In the video section there's a video "My life after opioids" - I interviewed the lady in this video for an article about pain management [which will be in the spring edition of Motability's Lifestyle magazine] and she is great.  She was on a LOT of opioids and found her pain went down drastically as soon as she started to come off them...  Many people are reluctant to embrace this idea because they think they 'need' their opioids/painkillers but in fact the way opioids/painkillers work means people experience hyperalgesia - heightened sensitivity to pain.
    Mindfulness has been well proven to help with pain, this is a good website and her book Mindfulness for Health is brilliant:
    www.vidyamala-burch.com
    Movement is also good for helping managing pain, it might seem counterintuitive but it works!  I find stretches sort all my pain out:
    https://www.csp.org.uk/public-patient/keeping-active-and-healthy/love-activity-hate-exercise-campaign
    I hope that helps.
    Emma

  • avakarlsson
    avakarlsson Member Posts: 333 Courageous
    Thank you Emma for the information, I have tried a lot of different pain reliefs and tried some excersizes  and tens machine and didn't benefit me as it didn’t take the pain away. I am on strong pain killers now they work a bit but still in chronic pain.
  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    @avakarlsson - have you tried mindfulness?  I thought it was a load of rubbish when I first heard about it but there's a lot of evidence that it work in managing pain, the book Mindfulness for Health is well worth a read, the first couple of chapters explains how pain works [ie there is actual pain and our 'suffering'/reaction to it - we can learn to manage this]].
    I strongly believe that people experiencing pain are being given negative and false messages about it and it helps to understand what pain actually is and that it doesn't have to be the beast that manages you...
  • avakarlsson
    avakarlsson Member Posts: 333 Courageous
    Hi Emma 

    yes I have tried meditation to see if it would help the pain but it didn’t and also I did a think action weekly course online I thought that would help for pain but it didn’t, I’m waiting to see someone dealing with talking therapies 
  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    Hi @avakarlsson
    If you have had a difficult past I would suggest that you might need specialist talking therapy ie a somatic therapist that works using sensations in the body (which are often manifestations of emotions) or perhaps EMDR. You might find CBT or other talking therapy useful but if you've had a difficult/traumatic past (very common in people experiencing chronic pain) you will also need to address that and it's a very specialist area... Otherwise I fear you will end up saying I've tried that and it doesn't help which seems to be the case so far.
    I hope you can find something that works...
    Emma
  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    PS the other thing I would say about mindfulness is that it does take a lot of practice, after just 8 weeks of daily practice there are changes in the brain though ie it's not quick acting but if you can persist with it you might find yourself feeling less reactive to your pain.
  • avakarlsson
    avakarlsson Member Posts: 333 Courageous
    Thank you for that Emma, I’m waiting to have company behavioural therapy for my panic attacks and hope that works, I want to be sorted and then I will be pain free afterwards 
  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    Good luck with it @avakarlsson you certainly seem to be working hard to find a solution.
  • avakarlsson
    avakarlsson Member Posts: 333 Courageous
    Thank you, yes I’m due to have a hip joint injection on the 31st to help the pain so I’m praying it will help 
  • avakarlsson
    avakarlsson Member Posts: 333 Courageous
    When you have had pain for a few years, it makes you tired and you think soon you will be better and it doesn’t as stuff takes ages

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