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Ive been on a pain management programme

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  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi @ClaireSaul

    It’s great to meet you today!!!!

    I hope you are ok “pain levels”

    It’s great to know that you are a “Pain Advisor” here!!!!!!

    I’m very sorry to pester you “straightaway”

    But my “pain journey” since 2005 has been a real nightmare!!!!!

    It seems to be the same situation for now & the near future which is “Great News” no not really!!!!!!

    Many thanks.

    Steve.


  • saraht
    saraht Community member Posts: 3 Listener
    I have chronic pain in my shoulders,aswel as having palindromic arthritis, iv had surgery on one shoulder and waiting for the other, but now my surgeon has retired and theres no replacement yet, been in pain everyday for over 4 yrs now,and its so debilitating and depressing,also waiting for pain management as my last injection didnt work, my pain medication keeps being swapped around but dont help much anyway, i do every kind of self help i can as i used to be a therapist and sports masseuse but the pain drives me to tears.  
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    Hi @steve51,

    Pleased to meet you too!

    So sorry to hear that you have been in pain for so long - pain is draining, physically and emotionally and can impact on so many areas of life.  I think that one of the hardest things can be the feeling that nothing is going to change.

    Are you able to tell me a little bit about your pain - if you are happy to do so?  Do you have a support network around you (including medics)?

    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    helpline@scope.org.uk
    scope.org.uk
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi Claire.

    Many thanks.

    Since 2005 I have gone from here in Birmingham to Oxford to Liverpool. I have been/still am very desperate in controlling/dealing with my pain.

    They all want me to have “Deep Brain Stimulation”
    But the NHS won’ fund the treatment. 

    This won’t happen in my time as NICE won’t give it the green light.

    All that happened at my 12mnt appointment’s was that the NHS still won’t budge see you again in 12mnts “great”

    Sorry to go on!!!!

    Steve.
  • ClaireSaul
    ClaireSaul Community member Posts: 92 Pioneering
    @saraht

    You are obviously having a very tough time.

    Do you have a supportive GP?  I'm wondering if the pain management you mention is the new shoulder surgeon (orthopaedic?) or a pain management team/course?  Maybe your GP could explore pain clinics and programmes in your area with you.....I do appreciate that you may already be under a clinic, but if you're not it would be worth exploring as the doctors will have a different outlook on the medications.  

    There are also some fantastic support groups out there.  I think that most of us know that our physical pain can spiral when we are hit by stress, lack of sleep or other emotional factors and so a vicious circle unfolds.  Whilst a support group won't take away the root cause of your physical pain, just having some other people who understand to support you might help with some of the emotional turmoil that comes with being in pain every day.  What social media groups do you use?

    In my experience I have sometimes found that other medics assume that I have all the necessary knowledge ass an ex nurse, and so they don't need to explain things fully.  I wonder if you might be experiencing something similar and others all assume that with your background you don't need their input - whilst clearly you do.  Some tips that might be beneficial:
    Heat pads - electric or microwave wheatpads, electric blanket in the bed
    Relaxing in a bath of epsom salts
    Topical gels and rubs (for instance ibuprofen gel)
    A gentle exercise such as pilates (try the APPI as a start point)
    Mindfulness/meditation
    Essential oils (you probably do know more about these than me!)
    Learn to pace your activity and accept help.  Asking for help is a strength , not a weakness!
    A healthy bedtime routine to help you sleep well - try to eat your evening meal earlier, warm bath, keep a regular bedtime, shut down electronic devices several hours before going to bed, avoid caffeine in the evening and opt for a milky drink prior to bed, ensure your bedroom lit with a low light and take a book to bed rather than watching TV - train your body that your bed is to sleep in.

    Finally keep talking to those of us who understand.  Your family and friends may want to support you, but if they haven't experienced the drag and turmoil of daily pain, they can't be expected to understand.

    I do help this might help - please keep in touch,

    Claire


    Claire Saul
    Chronic Pain Advisor
    Scope
    helpline@scope.org.uk
    scope.org.uk
  • Gail1205
    Gail1205 Community member Posts: 6 Listener
    cher77 said:
    Hi all I also suffer severe chronic back pain my diagnosis are disc degeneration suffer with slipped disc bulging and prolapse disc sciatica stenosis just turned 40 last year and been suffering with this for the past 7 years but got worse 4 years ago been on all types of medication which leave me well not myself lol insomnia depressed at times no social or martial activities pain in hips legs back pins and needles in legs and feet numbness in places on legs bum burning sensation now been diagnosed with diabetes high blood pressure high cholesterol weight gain was healthy size 12 now I'm size 18 as can't excersise  at the moment I'm stuck upstairs as in that much pain at the moment as slipped 3 discs but this time not going into hospital occupational therapist say i need a house now with stair lift and wet room at loads of MRI exrays ect now finally got appointment for pain clinic on 8th Feb not sure what to expect if anyone can let me know physio won't touch me as in that much pain they just say don't know why you have been sent here haha can' x

  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    I gained a lot of weight too when I was first injured. I cut down my food intake and tried to do anything that might keep my metabolism up. I'd have hot baths and do small movements, like swimming. You can only do so much; 18 isn't bad. I know it's not how you want to be, but have compassion for yourself. You're going through a very difficult situation. Unfortunately, my depression has caused me to stop eating for days at a time, so now I'm very underweight. GP threatening me with a section of I don't eat more. 

    Something I've found helpful: my pain clinic siggesugg we stretch three times a day: shoulders, neck, back, hips, arms, thighs, calves. Gentle stretches, slowly, and stop if pain gets worse. Rest in between if you need to. I often have to do them lying down. It has really helped. All my other muscles were tense and painful because I was tightening up due to the pain. Stretching keeps that to a minimum, and also seems to help my back - maybe other muscles aren't pulling on it so much?

    The pain clinic also taught us relaxation exercises. I was dubious, but they really help me. You have to do them a couple of times a day for several weeks to get in the groove, but it's worth it. 


  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    BTW, sorry I haven't talked about my PMP yet. DWP has sent me into a mental health tailspin. Will do it at some point!
  • CatLady28
    CatLady28 Community member Posts: 4 Connected
    Hi @Waylay, I wonder how you found the Programme? I’m on one currently, but I’m finding it really hard going.
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    @CatLady28 The first few days were really difficult, and really painful, but it got slowly better after that. The whole 3 weeks I'd basically wake up, get dressed, go to the programme, go back to my room, eat a sandwich, and go to sleep. Completely exhausted the whole time, but hey, I'm usually a massive insomniac, so it was actually refreshing.

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