Pain management — Scope | Disability forum
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Pain management

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jo46
jo46 Community member Posts: 19 Connected
Hi for 2 years I been seeing treat triage al this time I thought it was pain management I’m so frustrated upset I have just found out that it not pain management and not once has my doc or any other professional pick up on this even tho I have phoned my doc begging crying on the phone in so much pain I am now having to wait  45 weeks for a referral Which has really set my anxiety off can I ask people’s thoughts on pain management as I’m really struggling to take it all in DDD I have xx 
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  • woodbine
    woodbine Community member Posts: 11,744 Disability Gamechanger
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    Have you asked your GP for a referral to the hospital pain clinic? and now you are having to wait 45 weeks for that ?
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  • jo46
    jo46 Community member Posts: 19 Connected
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    Yes it was a nurologist that has refer me but I have complain to my doc about the lack of help advice support I have been crying out for yes 45 week for ia referral 🥲
  • Tori_Scope
    Tori_Scope Scope Posts: 12,496 Disability Gamechanger
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    That must be extremely frustrating, I'm sorry to hear this @jo46. Has anyone in your medical team been able to advise any pain management techniques to help you in the mean time?
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  • jo46
    jo46 Community member Posts: 19 Connected
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    Hi there thank you for the reply no I’m still none the wiser and still not been advised 🙈 in chronic pain faucet worst on a night time I’m hoping to hear back from. My gp on Monday there looking into why this has me er been pick up on I’m hoping I can get urgent referral 🙏🏻 As the only pain relief I’m in is amatrytline but was put on these years ago and  not for my DDD WAS for something elese I feel so let down not knowing where to turn as feel like modify really wants to know  thanks you xx 
  • woodbine
    woodbine Community member Posts: 11,744 Disability Gamechanger
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    It's fact I'm afraid that waiting list for most treatments are longer than ever, I have been waiting to have a routine problem sorted out, it's not life threatening just uncomfortable I'm finally seeing a consultant mid March having had the problem since the beginning of August, it will probably only take them half an hour to treat the problem.
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  • jo46
    jo46 Community member Posts: 19 Connected
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    Aw very frustrating for you I hope you get it sorted sooner and then you can put it behind you xx I’m more frustrated that I struggled for 15 years but the last 3 I. Chronic pain now I’m gonna have to wait nearly a year again when all this time it should of been flagged up but need to try be postive need some guidance on medication cos I cannot wait a year on the level of pain relief I’m on I’m really unsure now who to go too xx 
  • poppy123456
    poppy123456 Community member Posts: 54,759 Disability Gamechanger
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    I’ve been to the pain clinic several times and found them useless! I was referred back to them before the pandemic and waited a whole year for my appointment because the waiting lists were huge. The appointment was a complete waste of my time and fuel costs to get there. 
    I hope you have more success but the wait could well be much longer than you were told.
    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.
  • jo46
    jo46 Community member Posts: 19 Connected
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    aw no really im
    sorry to hear that 🥲🙈so can I ask how do you manage your pain who sorts out your medication x 
  • chiarieds
    chiarieds Community member Posts: 16,125 Disability Gamechanger
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    Hi @jo46 - I'm very sorry to read you have been suffering so much. It's good that you will be speaking to your GP on Monday, as they may be able to advise about more effective pain relief.
    I don't know for sure, but I wonder if you might get a physiotherapy referral in the meanwhile, which may be quicker, & a physio may also be able to help you. Perhaps this is something worth asking your GP about too. Kindly let us know how you get on, thank you.
  • jo46
    jo46 Community member Posts: 19 Connected
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    Hi lovely I am currently attending physio I had 2 sessions up to now it more I feel I need some medication to help with the pain  im in I always feel like my go want to just pass the buck there are ringing me Monday and we will see I just know I need something as I had put up with the pain for 2 years and I am honestly all drained out physically mentally xx
  • chiarieds
    chiarieds Community member Posts: 16,125 Disability Gamechanger
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    Hi @jo46 - as a long-retired physio, I wanted to mention this, as I know it can help. As someone who now does the exercises I used to teach, I know it can help. As someone who has chronic pain, I feel, from my own experience, & those I've read about from other chronic pain sufferers here on Scope, that it's often a combination of things that can help 'manage' our pain.
    I do hope that continuing sessions of physio may indeed help, but yes, we often need medication too (I do). And when your anxious & stressed, then pain levels can, & often do, increase, so I appreciate it has drained you both physically & mentally.
    Would you try this for me? It's actually a breathing exercise, which may sound a bit odd, but it's another thing I used to teach, & something I use myself every single day. Now breathing 'properly' can actually reduce stress & pain. By itself of course it's not a cure-all, but another thing that can help too. Please see: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf
    P.S. you don't need a pillow under your knees, tho this can often help back pain sufferers. Do hope you'll give it a try.
  • poppy123456
    poppy123456 Community member Posts: 54,759 Disability Gamechanger
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    My GP manages my medication and i manage my pain by mostly trial and error, what works for one may not work for another. I know my limits and will try my hardest not to cross that line, if i do then i know i pay the price for it later and for the following few days.
    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.
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    jo46 said:
    Hi there thank you for the reply no I’m still none the wiser and still not been advised 🙈 in chronic pain faucet worst on a night time I’m hoping to hear back from. My gp on Monday there looking into why this has me er been pick up on I’m hoping I can get urgent referral 🙏🏻 As the only pain relief I’m in is amatrytline but was put on these years ago and  not for my DDD WAS for something elese I feel so let down not knowing where to turn as feel like modify really wants to know  thanks you xx 
    Hi Jo sorry to hear all this, i'm not very good with with some abbreviated words, could you tell me what DDD is please 
  • jo46
    jo46 Community member Posts: 19 Connected
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    Hi hun sorry it is degenerative disc disease 
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    ah i'm with you now - snap thats part of my condition and by the sound of it others to.
    As your already seeing a physio therapist thats a fantastic start, have you had  a recent xray.
    I do feel you need to talk to your doctor about a change in your pain relief.
    Please follow what Chiarieds has to say it is very good advise and extra help you may not get from your theropist
  • jo46
    jo46 Community member Posts: 19 Connected
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    Great I will do yes I will continue the breathing I   feel is massive part as my hubby in hosp and has been in over a week I do feel I’m very stressed right now and my anxiety through the roof which I know won’t help my back at all I will defo speak with my guy untill I get app with pain management I eve. Been thinking would a chiropractor help ? Just really not sure which things to try esp when got other issues with my bladder which makes it difficult towards the right medication I appreciate all your help advice thank you 💞
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
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    Hi there 

    I have been to a chiropractor when I had back issues several years back and he was amazing it was like having a miracle cure 

    It did initially result in very painful treatment but after a few treatments started to feel the benefit 

    It wasn't cheap though and I was having 3 sessions a week initially but this reduce . I went for over 2 years for ongoing maintenance 
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    yep @jo46 and @janer1967 going back a few years now i had 6 months intensive physio at hospital i had manipulation/acupuncture all sorts- it was agony at the time but so worth it - unfortunately i can not have any think like this again, since my bones have moved - but hey hoo it kept me moving and at work for many years, so i think i am lucky compered to some.
  • jo46
    jo46 Community member Posts: 19 Connected
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    Aw bless you sue I know this is the hard thing when your trying to still work less normal life it very hard I miss out on lots of things as I cannot go as for to not been able to sit long without the pain and been uncomfortable I just admit I am struggling very much so have had a bit of time of work but I’m so hoping I can just get some answers on the right  meds I’m hoping I can control level if pain x 🙏🏻Good luck too you all 
  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    jo46 said:
    Aw bless you sue I know this is the hard thing when your trying to still work less normal life it very hard I miss out on lots of things as I cannot go as for to not been able to sit long without the pain and been uncomfortable I just admit I am struggling very much so have had a bit of time of work but I’m so hoping I can just get some answers on the right  meds I’m hoping I can control level if pain x 🙏🏻Good luck too you all 
    thanks Jo yep i've been of work now since last September, i do think this is deff  end of my career, but hey ho i think i've done well, i was first diagnosed when i was 30 i'm 64 now so i think i've done well.
    You sound like me with sitting/standing/walking and sleeping. i have brought an orthopedic cushion for in the car, that helps in the house i have brought a big chill mat, which i might add one of my son's said they brought one for their dog last summer ha ha, i have also got an acupressure matt both of which i take turns to sit on - then you have to stand about every half an hour then you have to walk a little ha ha sounds like a full day- good luck with your doc. 

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