Dealing with chronic pain
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In pain all the time

avakarlssonavakarlsson Member Posts: 329 Courageous
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 

Replies

  • Chloe_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    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! 
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  • avakarlssonavakarlsson Member Posts: 329 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_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    Hi @avakarlsson, have you ever tried a TENS machine or ice? These are other things that can help with pain.
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  • avakarlssonavakarlsson Member Posts: 329 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.
  • thespicemanthespiceman Member Posts: 6,408 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
  • avakarlssonavakarlsson Member Posts: 329 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 
  • thespicemanthespiceman Member Posts: 6,408 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_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    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? 
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  • avakarlssonavakarlsson Member Posts: 329 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 
  • avakarlssonavakarlsson Member Posts: 329 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 
  • EmmaBEmmaB 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

  • avakarlssonavakarlsson Member Posts: 329 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.
  • EmmaBEmmaB 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...
  • avakarlssonavakarlsson Member Posts: 329 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 
  • EmmaBEmmaB 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
  • EmmaBEmmaB 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.
  • avakarlssonavakarlsson Member Posts: 329 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 
  • EmmaBEmmaB Member Posts: 263 Pioneering
    Good luck with it @avakarlsson you certainly seem to be working hard to find a solution.
  • avakarlssonavakarlsson Member Posts: 329 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 
  • avakarlssonavakarlsson Member Posts: 329 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
  • EmmaBEmmaB Member Posts: 263 Pioneering
    I guess that's why they now talk about pain management rather than resolving pain, all in all its definitely a process that can take time...
  • avakarlssonavakarlsson Member Posts: 329 Courageous
    Hi Emma,

    I do go to pain management at the hospital I go to, I thought it would be different but the person only talks to you about it, I thought it would be different physio involved too but it’s not. 

    I haven’t benefited from pain management. I’m still going to the appointments but I feel it doesn’t help 
  • EmmaBEmmaB Member Posts: 263 Pioneering
    @avakarlsson
    I think the problem is that it can be luck of the draw who you get... I went to pain management last year with extreme pain in my hip.  I didn't hold out any hope [as my disability is rare and my joints are very abnormal] but I met the best physio I have ever encountered there and I went from 9/10 pain to 0/10; mainly because she took time to work out the problem and pin point which exercises, which were actually stretches, would work for me. 
    I was sceptical even at that point that stretches would help but I persisted and persisted and the pain went, if I have a flare up now I just go back to doing them and they still work. 
    My point is that not all physios or pain management personnel are the same so my guess is that it can be hit and miss.
    Just talking about pain probably isn't enough, though I do think it can be part of the picture because when you've lived with pain for a while it can be part of who you are/your identity - Who would you be if you didn't have it?  What would that mean?... 
    I think there are very strong psychological aspects to pain and part of managing it is about believing that is possible.
    Emma

     
  • avakarlssonavakarlsson Member Posts: 329 Courageous
    Hi 

    Thank you for the information, yes it does depend if you have a good physiotherapist then it will work and I did have physio before and it didn’t work but I’m seeing a hip physiotherapist so hope I get an appointment soon and it will help me 
  • avakarlssonavakarlsson Member Posts: 329 Courageous
    There’s never a day I think and notice I am not in pain, everyday chronic pay and just makes you feel sad as it’s gone on for a few years now, and you want to see your best friend which you can but if you want to do something then that day is one of the bad days then you can’t. 
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hi, where is your pain and do you know the cause of it.? Is it mainly your hip? I hope the injection you are soon to have, helps.

    I have been disabled for 22 years and have had a lot of pain over those years.

    I have recently got some amazing pain relief due to quite a simple thing...wheelchair services fitted a new curved back support to my chair.

    I cant believe the difference.....No pain as such, just a bit of discomfort.

    After years of chronic pain it`s lovely.

    So check your posture and support, if you can. xxx
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    Hi @avakarlsson, please do let us know how you get on with the hip injections! Hope you're having a good day. :)
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  • avakarlssonavakarlsson Member Posts: 329 Courageous
    Hi 

    yes I’m just praying and hoping the injection going in my hip joint will stop the pain even if it’s temporary while they decide what to do for my hip, I will still have the chronic neck pain 
  • JazzaGJazzaG Member Posts: 13 Listener
    Hi, I'm a newbie too, but I thought I would give you an insight into how I manage my pain. Due to spondylosis, I have lived with varying levels of chronic pain in my neck and shoulder for about 15 years. I had regular steroid injections which helped dull the pain, but didn't stop it completely. I am prone to falling, on one such fall I gave myself whiplash, which has aggravated the nerves in my neck, increasing the pain, which then spread into the back of my head.
    Over the years I have developed arthritis in my hip and knee and lower back pain and sciatica.
    I have tried many different types of painkillers, most are effective at first, but their effect decreases over time. I also now have a hiatus hernia caused by using ibuprofen (nsaids) over a long period of time.  
    I moved to a house within throwing distance of a leisure centre a couple of years ago, and saw an aqua aerobics class advertised. I needed to lose a bit of weight, so I decided to enrol. The exercises are extremely low impact and help you stretch and exercise your muscles and joints gradually, without stress. I feel stronger and a lot more flexible than before, and I seem to be able to move a bit quicker than I used to. I now even go just to swim, a couple of laps of breast stroke is all, but it reduces the pain and keeps me from seizing up. It also elevates my mood, which can't be a bad thing. I would definitely recommend aqua aerobics or any sort of hydrotherapy. Hope this helps.
  • avakarlssonavakarlsson Member Posts: 329 Courageous
    Sorry to hear that your in pain too with your condition, I have tried hydrotherapy which didn’t help I am just hoping even with this injection it’s temporary relief for a bit as to what the plan will be, I will have my chronic neck pain but they thinks that’s due to posture. 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,251 Scope community team
    Hi @JazzaG and a very warm welcome to the community! Thank you for taking the time to share this with us and I'm glad to hear that you have found some things which can ease it.
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  • avakarlssonavakarlsson Member Posts: 329 Courageous
    Had my hip joint injection on Friday at the hospital I go to I was ok ish after I could walk and eat after I was discharged in the afternoon and in the evening I was in a bit of discomfort but yesterday morning I couldn’t walk or stand had to get an ambulance out and I went to another hospital and they said that happens on day 2 the other hospital I had it done at they didn’t tell me that only told me the basic instructions and what could happen.
  • Adrian_ScopeAdrian_Scope Administrator Posts: 7,509 Scope community team
    How frustrating @avakarlsson. If you'd known it was going to happen, it probably wouldn't have been half so alarming. How are you feeling today?
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  • avakarlssonavakarlsson Member Posts: 329 Courageous
    Yes it was pretty scary on Saturday when I was about to get up and couldn’t stand or walk, if I got told then I wouldn’t of been scared. Today isn’t too bad still got pain and discomfort from where the injection went in, yesterday was the same pain and discomfort but today I think is a bit more worse 
  • avakarlssonavakarlsson Member Posts: 329 Courageous
    So now I have to keep a pain diary for a 1-2 weeks then I can and see the surgeon again in 6-8 weeks then when I seen them they will have a plan on what to do as they are having a meeting in a couple of weeks time to discuss my case 
  • ClaireSaulClaireSaul Volunteer community adviser Posts: 92 Pioneering
    Hi @avakarlsson (and @JazzaG )
    I'm just catching up on this thread having had a particularly bad chronic pain month myself.  This chronic pain can be soul destroying can't it? 
    @avakarlsson So glad to see that such good advice has been offered (the article that @EmmaB mentioned is now out and very good!) and I am sorry that you are having such a rough time.  How have you been this week following your injection?
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • avakarlssonavakarlsson Member Posts: 329 Courageous
    Yes being in chronic pain all the time is no fun, I have a bit less pain but not much it’s around a 6 and the injection site inside is till tender, from Monday afternoon I haven’t been feeling well, feeling sick dizzy sensation, hot and cold hands and warm forehead, I have got a doctors appointment at 3:10 today 
  • avakarlssonavakarlsson Member Posts: 329 Courageous
    I don’t no if it’s from the injection or infection from the injection 
  • ClaireSaulClaireSaul Volunteer community adviser Posts: 92 Pioneering
    Hopefully your GP will be able to tell you if you have an infection - good luck and let us know how you get on
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • avakarlssonavakarlsson Member Posts: 329 Courageous
    Yes she will say if I have got an infection does anyone know about this injection I’ve had and does it cause making you feel ill.
  • avakarlssonavakarlsson Member Posts: 329 Courageous
    Hi had my Gp appointment she said it could be the Tramadol I am on so instead of taking 2 capsules just take 1 each time and see how I am over the weekend if no change go back next week, it wasn’t my usual doctor who I much prefer, if my doctor was in today I would of seen her 
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