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Chronic back pain with nerve damage

kjparkins Member Posts: 5 Listener
Hi, I have suffered chronic pain since a works accident in 1998, my left hand side doesn't work very well and I walk with crutches or sometimes I'm in a wheelchair, I take 100mgZomorph twice a day 900mgGabapentin 4 times a day and 20 mg of BACLOFEN 3 times a day just to be able to cope. I was written off by doctors early on in 2000 and suffer from badder problem so have a superpubic catheter, my husband cares for me and I'm very lucky to have such a brilliant one, I am now waiting for another medical when they switch me over from the life long DLA so am now getting very anxious with all the stories as I have no new medical reports since 2003 as doctors can't do anything for me and it seem stupid to asked to get referred back to the hospital just to get evidence they still can't do anything when there's  people who need those appointments to get help, I don't know what to expect or do while I am waiting for that letter to drop on the mat that I have to reapply.


  • sleepy1
    sleepy1 Member Posts: 297 Pioneering
    Hi @kjparkins and a warm welcome to our community center.

    I completely understand your dilemma in getting any new medical evidence when you have been told basically it is what it is nothing more we can do......learn to live with it.  I was told this many times from my GP when asking for a refer back to my neurologist, lets try some different pain killers and other drugs instead!

    It is admirable that you have considered the drain on the NHS and others needing appointments.  I have had the same thoughts but then insisted for a referral so I can get a conclusive answer if there is anything new that could help me or am I just living on false hope.  After months of pestering and waiting have now got an appointment in May.

    Although judging by what other people have posted even the most highly esteemed consultants view's hold little or no weight to the decision as to whether your fit to work or entitled to any financial help.  That decision I'm afraid will rest in the hands of much less educated people who think they know better.

    When you get that letter......form to fill in, focus on how things affect you from day to day, tell them your history and why you have no recent medical evidence.  It may be worth writing a letter to your GP in advance so they can clarify your situation and give their opinion if there are any miracle cures worth exploring?

    .Hugs Rosie

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @kjparkins, and welcome to the community! 

    So sorry to hear that you're living with pain. You might like to have a chat with our chronic pain advisor, or check out our previous chronic pain discussions.

    Best of luck with your upcoming assessment, if we can offer any guidance just let us know and we'll do our best to help.

    This is just a suggestion and might not be possible, but I was recently in a similar situation where I needed medical evidence from a specialist I'd previously been discharged from, and I got what I needed by emailing their receptionist/secretary who I found by searching online for the department they worked at and explaining the situation. Might be worth a try!
  • kjparkins
    kjparkins Member Posts: 5 Listener
    Just knowing I am not alone in thinking this helps thank you.
  • ClaireSaul
    ClaireSaul Member Posts: 92 Pioneering
    Hello @kjparkins,

    You are most definitely not alone!  There are so many of us within our community who live with daily chronic pain and who have also had to provide evidence of it to benefits assessors.
    As Rosie says, it is admirable that you are still thinking of others before yourself - but when it comes to your PIP assessments, it is purely based on how much you can do for yourself.  I wasn't on DLA but went straight on to PIP and initially was given the lower rate for both aspects.  At my 3 year review I was given enhanced rates.
    The difficulty with proving your pain is that it is an invisible illness.  Your assessor will be able to see your sp catheter and therefore understand immediately that you have a bladder problem, but they can't see the pain.  
    When you assessment forms do arrive don't panic, but there are a lot of pages to fill in.  Will your husband be able to help you?
    I had to do it a little at a time - but be aware of the date that it has to be returned by - and I did find myself repeating myself in most boxes as I mentioned the pain.  Also remember to document your pain and other disabilities for the worst day. The fact that hospital consultants have discharged you shouldn't make any difference - in fact if you have those letters stating that there is no more to be done, these might help.  Like Pippa, I was also able to track down information from secretaries and my GP also printed out all the letters sent to her from different consultants.  
    Think of all the things that your pain stops you doing for yourself - including caring for your catheter.  There is a great deal of emphasis placed on coping in the kitchen - so if you are unable to pick up a saucepan safely, or prepare a meal safely due to the nature of your pain, say so.  My difficulties with my hands are down to pain - the assessor suggested that I try some adapted aids/cutlery etc, but accepted that I could not use a sharp knife safely.
    A UK website that I found invaluable as i went through this stressful experience was and there are advisors here on our Scope team.
    Whilst you wait try to remember that anxiety and stress can increase relaxation, massage, anything that helps you to relax. But..remember to include how stress increases your pain increases your dependence when you fill the form out.
    I have written so much - but I am very happy to chat more if it helps!


    Claire Saul
    Chronic Pain Advisor
    [email protected]
  • kjparkins
    kjparkins Member Posts: 5 Listener
    Thank you so much for your words of advice, sorry taken so long but have had a fall and have been in hospital for 2weeks and am now in a rehab unit attached to an nursing home as have hurt my hip, its just after going through it and already been given life time then to be told you have to do it all over again but have no up to date medical evidence I know they will have second thoughts just because of this after recently going through it to change from the old incapacity benefit onto the new the person I saw wasn't a doctor but told me I could be turned down for that as I had no New medical evidence.
  • dadoovron
    dadoovron Member Posts: 2 Listener
    Two years I been the same some days I feel like I can’t go on any more. 
  • kjparkins
    kjparkins Member Posts: 5 Listener
    i know it is hard to think different but please talk to your doctor about it because your not alone in thoughts such as this, I talked to my doctor and my family after and got help.


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