Don't know what to do!

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    Hi, first time e here. I injured myself at work 5 years ago my chiropractor said if I couldn’t have told him what I had done he would have thought I had been involved in a major RTA.
    This evening I had a call from my GP to say that the latest referral has been declined due to my high pain level, I was referred to Rosa Burde in Bristol.
    So what has happened was seen eventually by Neurology consultant who initially said I had Brachial Plexus syndrome, on the last appointment I had with him he said that I didn’t have it and the next consultant would sort it. My new consultant went on a sabbatical, paternity leave and I derive his care I wasnt seen for a year he then decided to send me to see a Professor, who recommended lidocaine patches and to attend a PMP but my GP didn’t agree. And so I have been left floundering until this time last year when the pain started to increase. The PMP refused as they said it’s too neurological and now the neuro specialist say I have too much pain for them!
    Where do I go now and how do I get my pain under control????
    I have minimal sensation in my right arm and hand the pain comes from my right shoulder travels up my neck over my shoulder towards my breast and also from the spine round to the front of my chest.
    Medication is lidocaine patches, ibuprofen 600mg 3 to 4 times a day and 30mg codeine upto 8 a day. I have tried lots of different tablets but reacted to them.
    I am sat in tears and just don’t know where I go from here. 🙁



    Hi Elle, welcome to this site,there are links at the top of the page in blue one is pain relief and the other is resources. might be worth looking at them. are you under a Pain clinic? as this would be a good start to get your pain under control .if not ask your GP to refer you to one. I am aware that what help you get varies with the area your in across the country.
    Have you tried a Tens machine this may help you. also relaxation and meditation might help. you cope a bit better . I know that with long term pain you can have mental health issues and Found that CBT and Mindfulness and also this site talking to others that live with pain and truly understand what what your going through with empathy,
    I have lived with pain also nerve pain for about 23 years now so understand the frustrations of hospitals and trying to get pain under some control,and mental health issues. you are not alone . also sometimes you have to keep badgering and make a pest of yourself to get GP’s and others to help you in the right direction and sometimes you have to go above them to get help. I know that sometimes a chiropractor can make your condition worse as I have met a lot of people up the hospital under the physio who ended there as a chiropractor was not working for them and condition was worse.I was told for me, to steer clear of them. but what meds and alternative methods works for one doesn’t mean they will work for you. it a case of trial and error to what combination of things work for you personally. but a good pain clinic would keep working with you to get your pain under control. and GP’s can get it wrong sometimes also might be due to red tape and political issues like cash allowances for your area and GP surgery. either way I hope you find and get the help you need soon , let us know how you get on there is always someone to answer your questions. also someone else might be able to give you more advice. take care and best wishes. Lee.



    That sounds an awful situation. Would it help to take someone to the GP for moral support to see if they could suggest/recommend something else?

    The Patients’ Association could perhaps advise you. You can either email or ring them, I think.




    Hi Elle – welcome to the forum, and so sorry to hear your plight, and can you get your Professor to refer you to the pain clinic? Or can you get a second opinion from another GP in the practice? My route to the pain clinic is when physio said they could no longer help me, I said what on earth am I meant to do now then, and they referred me. Plus is the Rosa Burde a pain clinic? As when you type it in – it doesn’t say it’s a pain clinic – so have you been referred to the right place? It might be worth googling pain clinics in your area and suggesting one, as I did, as the one the physio recommended was really too far for me to get to.
    I hope you find a solution sooner rather than later – take care & best wishes AnnieD



    Hi Elle,

    This sounds a terrible situation. You really need to get into a specialist Pain Management Clinic.
    The drugs you are taking are just for weak to moderate pain, so are not going to help. And Ibrupofen is not a pain killer, its an anti-inflamitory. And high doses are very bad for your stomach !.
    People call it a pain killer, even the NHS do. But its not.

    I dont know whats around Bristol, but i can highly recommend St Thomas in London which is supposed to be the leader in the country. I attend there and i know there are several people from Bristol that visit there too as patients.
    You dont need to worry about transport either, they will send a car all the way to Bristol to pick you up and take you there, and return you home.

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