Hi, I'm lellyann! Have chronic pain and pain clinic input not helped. — Scope | Disability forum
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Hi, I'm lellyann! Have chronic pain and pain clinic input not helped.

lellyann
lellyann Community member Posts: 12 Connected
I am trying to sort out my pain and failure with the pain clinic. Is it just me?

Comments

  • poppy123456
    poppy123456 Community member Posts: 52,406 Disability Gamechanger
    Having had experience quite a few times with the pain clinic I’ve never found them helpful at all.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • ShirleyW
    ShirleyW Community member Posts: 355 Pioneering
    Me neither.  I think you have to find your own way of dealing with it.

    I do gentle yoga, meditation and distract myself with my dolls' house hobby and listening to music.  Not always easy though.
  • lellyann
    lellyann Community member Posts: 12 Connected
    How have you gone on without the pain clinic. They seem to be the holy site for pain right now! I don’t know what or where to go next. The pain clinic are saying to me that they can’t give anything else to work and nothing they can do in future, I have been with them over a year this time and feel totally let down. Following all their advice taking the medication they have given been to hell and back and now they say “sorry we can’t help”. I’m confused by what good they actually do. There must be lots of success and a few not successful.
  • poppy123456
    poppy123456 Community member Posts: 52,406 Disability Gamechanger
    I manage my pain in other ways. I see very little point in continuing with a service if they are of no help. 
    You need to find a way of managing the pain because what works for some may not work for others. 
    For chronic pain unfortunately there’s only  a limited amount of help they can give you. 
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Hi @lellyann and a warm welcome to our online community, I'm sorry your experience with the pain clinic hasn't been a positive one. It sounds like others have had mixed results too but I understand your disappointment and frustration.

    I'm guessing you have, but have you tried alternative ways of managing the pain? Did anything work? And, would it be worth revisiting your GP about this? I appreciate it's more difficult than ever to get an appointment.

    Just to let you know, I've moved your thread to our Chronic pain and pain management category which you might want to browse to read others' stories that you can relate to.

    I hope to speak again soon, and wish you a happy Thursday.
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  • chiarieds
    chiarieds Community member Posts: 15,894 Disability Gamechanger
    Hi @lellyann - & welcome to the community. I haven't ever been to a pain clinic/pain management course, but agree with the above comments that it's very helpful to find your own way in managing chronic pain; we're all individuals, so it makes sense that what works for one may not work in another. Often it's found that a combination of ways in managing pain is more beneficial.
    I personally use gentle exercise, distraction (for me it's reading, watching a film or listening to music & gardening), mindfulness & visualisations. I also use diaphragmatic breathing which can relieve stress & pain. Please see: https://www.nbt.nhs.uk/sites/default/files/attachments/Diaphragmatic Breathing.pdf
    The following website's 'Ten footsteps' programme is also full of ideas: https://livewellwithpain.co.uk/ten-footsteps-programme/  You need to give your email address, & name (I just put in initials) to access this.
  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
    I found a pain clinic really beneficial.  Out of curiosity how were yours conducted.

    Mine was a residential course for 3 weeks.  A Psychologist, a lifestyle coach and a medication expert.
    All doing different modules through out the day.  With exercise plans thrown in.  Plus the chance to mingle and socialise with 7 different people going through the same things in life

    I'm still in chronic pain but can cope a lot better than I was doing
  • lellyann
    lellyann Community member Posts: 12 Connected
    Thank you so much for your replies. It definitely helps to hear from other sufferers. I have been to the pain clinic about ten years ago and it was very different then more a one stop clinic to see if I was having all things to help. This time I have been under them for over a year, in this time they changed my medication numerous time to see if there was a better combination than the last one, these included the new type gabapentin, pre gabalin,tapentadol and duloxetine all of which gave no pain relief and a really bad reaction to the of them. I think they just don’t work for me, it totally individual but I feel now they can’t won’t help me because of this. I’ve been down the morphine road too. I have done courses on pain management and learnt about meditation, relaxation, keeping mobile, doing mind management all of which I have given 100% and open to all advice. I feel now as I’ve not responded well they are giving up on me! I have been in pain for nearly 30 years now I don’t wallow but pain is pain pain in my bones pain with my skin pain with the whole system including mental pain! I just want to have a life that could be at a managing level. I’m sorry to say so much but it was only today I was told there was nothing more the pain experts can do for me, so it’s raw and knocks me but I promise after a few days I learn to live with it again. I know there’s no such thing as pain free and no magic pill but I can’t stop trying right? 
  • Sandy_123
    Sandy_123 Scope Member Posts: 43,948 Disability Gamechanger
    Hi @lellyann sorry to read that you are in so much pain and not getting benefit from all the things you've tried. 
    Nothing worse then constance pain, I can't offer any solutions for you. Other then speak back to your go and specialists.
  • WelshBlue
    WelshBlue Community member Posts: 703 Pioneering
     I know there’s no such thing as pain free and no magic pill but I can’t stop trying right? 
    You don't sound the type to give up ... I hope things ease for you soon, and you can keep a positive attitude

    It's strange how so many of us need to use different combos.  Like you I've tried most things, but have to stay away from opiates.  For now 600mg of Carbamazepine, 50mg of Pregabalin and 90mg (increasing to 120mg in two months)of Duloxetine takes the edge off some days.  Doesn't always work ... last night I couldn't bear the quilt touching me ... today not so bad.

    Good luck in your journey
  • lellyann
    lellyann Community member Posts: 12 Connected
    Thank you so much for your replies. It definitely helps to hear from other sufferers. I have been to the pain clinic about ten years ago and it was very different then more a one stop clinic to see if I was having all things to help. This time I have been under them for over a year, in this time they changed my medication numerous time to see if there was a better combination than the last one, these included the new type gabapentin, pre gabalin,tapentadol and duloxetine all of which gave no pain relief and a really bad reaction to the of them. I think they just don’t work for me, it totally individual but I feel now they can’t won’t help me because of this. I’ve been down the morphine road too. I have done courses on pain management and learnt about meditation, relaxation, keeping mobile, doing mind management all of which I have given 100% and open to all advice. I feel now as I’ve not responded well they are giving up on me! I have been in pain for nearly 30 years now I don’t wallow but pain is pain pain in my bones pain with my skin pain with the whole system including mental pain! I just want to have a life that could be at a managing level. I’m sorry to say so much but it was only today I was told there was nothing more the pain experts can do for me, so it’s raw and knocks me but I promise after a few days I learn to live with it again. I know there’s no such thing as pain free and no magic pill but I can’t stop trying right? 
  • lellyann
    lellyann Community member Posts: 12 Connected
    Thanks again and welshblue I'm glad they are working for you, sometimes.I hope as they up the duloxatine dose you even more relief from your pain. I hate the nights when nothing lets you sleep, always worse than days for me.
  • JanetMor
    JanetMor Community member Posts: 74 Courageous
    Last I heard from the pain clinic is people don't suffer with pain, their bodies are just remembering pain from an earlier injury. I think this is absolute rubbish
  • ShirleyW
    ShirleyW Community member Posts: 355 Pioneering
    edited February 2023
    JanetMor said:
    Last I heard from the pain clinic is people don't suffer with pain, their bodies are just remembering pain from an earlier injury. I think this is absolute rubbish
    I agree, what a load of rubbish!

    Maybe I should say that to my knee when the bone is grating on bone because there's no cartilage left!  

    Or better still I'll tell my surgeon that he's out of a job because people's arthritic hips and knees aren't actually causing them pain so he doesn't need to replace them!

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