It takes some getting use to! — Scope | Disability forum
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It takes some getting use to!

AndyGT Member Posts: 412 Pioneering
Hello Everyone.  I have read a few things over the past week or so re Chronic Pain and have decided to put pen to paper (so to speak) to talk about my situation.  I don't expect many replies. If any.  I have been struggling with pain and mobility problems for 20 years or so you would think that I would be use to it.  Unfortunately, life is not so easy and predictable but suffice to say I am not finding it easy and at times it is a real struggle. After reading some of the comments here, which have been a help in themselves I was wondering whether writing my own piece would help me in coming to terms and helpping myself.  The first thing I have to say and to apologise for is that at times I can be rather 'wordy' when I write so I am sorry.

Well, firstly it began 20 years ago.  I could even put a date and time on it but no reason to I guess.  I use to be a Policeman and was also active in my spare time.  When shift patterns allowed I would play golf, rugby, badminton etc. I enjoyed camping, walking and many other outdoor pursuits.   

Then, in February 1996 it all changed.  I was on duty and took an urgent assistance call and to cut a long story short I had an accident.  I was x-rayed thst night and was told it was 'whiplash', they put my neck in a collar and told to go home.  There was nothing wrong with my neck.  Eventually I had an MRI scan snd they found a slipped disc. The disc had slipped atvan angle snd was compressing the nerves. Eventually I had an operation and they removed a disc and did some fusion work.  Anyway over the next 12 months there was no real deterioration.  In that time I had vsrious tablets, accupuncture epidurals.  All seemed to work for a while but that period of reliefbwould get less and less. 

During the next 10 years to date, things have progressively got worse and that detioration seems to be getting worse.  Firstly the pain just increased.  It would begin ss a small intense pinhead sized pain in my lower back in the region of the operation.  It would then radiate outwards to my legs and hips.  This intense pain may only last for 10 minutes or so nut it incapacitated me for that period and at times would be accompanied by pins and needles in my feet followed loss of feeling.  Then I noticed that these periods were getting longer and longer.  To the point that it became permanent.  The epidurals continued with tablets.  The period of relief had begun with about 4 or 5 weeks.  Then the last one only lasted a mattter of a day or so.  

The pain has gradually got worse, my movement has become laboured and at times very difficult.  I now use a walking stick every day and am finding I am having to use two or a walker on a more and more regular basis.  The times I am having to use an electric scooter are also becoming more frequent.  I still lose feeling in my feet.  I get pain and discomfort that I find it hard to describe and to be honest one of the hardest things is thst my concentration is not what it was and focussing is not easy.  

The pain just continued to get worse. Tablets were changed and a lot of the time I would feel that I was facing this on my own.  I wasn't as I had friends and I had family, but I didn't always want to 'bother' them as everyone had their own stresses and strains nowadays.  I would feel that at the end of the day I was on my own. 

About 4 years or so ago I had a spinal cord stimulator implanted in my back to help with the pain management.  It does help.  It hasn't eradicated the pain but it does help manage.  That is the help with medication and it does feel like that it is the only way I can get through the day

The pain is now not just the lower back it also hurts around my knees, hips and groin. The pain at times beings me to tears and feel like I am falling to bits.  It hurts to stand for any length of time, which doesn't help if I am washing up or if I am ironing I have to sit at the board and turning over in bed can make for a sleepless night.     A couple of months ago I started having noticeable pain in my upper body from below my neck betweenthe shoulder blades.  This makes carrying stuff (which wasn't easy before), harder and much more painful.  I can feel my neck crunch and grind with the smallest of movements which at times is accompanied by  a crunching and grinding of either tje shoulders or knees.  All of this is exacerbated when it is raining.  Which it is today.  To be honest I can't remember when I was last free from pain or even what it felt like.  Things now are just so painful and so difficult.

As I said at the top you would think that by now I would be use to it, but no and to be honest I don't know if I ever will.   Though I may just accept and put up with it.  

ps Also I am sorry if it has dragged on a bit.


  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    Hi @AndyGT  

    It seems fair to say that there is nothing like chronic pain and it's hard to convey what it's like to live with it to someone who doesn't experience it and I'm not sure it's possible to 'get used to it' when it's presence is a constant reminder... My pain levels vary, sometimes I'm in very constant pain in particular parts of the body and then I might get a day where I think wow I'm not in pain today - that feels weird!  

    My first thought on reading your e mail is probably because I've just finished reading a fascinating book called 'In an Unspoken Voice:  How the body releases trauma and restores goodness' by Peter Levine.  

    The reason this springs to mind is because I'm wondering whether any of your pain is effectively 'trapped trauma' - it sounds like you actively damaged yourself in the accident but there might be a possibility that some of the pain is [to almost quote the title of another very good book] your body keeping the score [The book is 'The Body Keeps the Score' Van der Kolk]?  

    This is just an idea because there is more and more evidence of how emotions, stress and the like are displayed through the body and I only suggest this as a possibility because it sounds like what happened that day could have been quite traumatic.

    It also sounds like you were a very active man before the accident and I wondered whether you've been able to regain the ability to do any of the activities you probably loved or replace them with new activities or whether the pain just makes activity impossible?

    One final thought is whether you've ever done any mindfulness?  I have to say I thought it was mumbo jumbo when I first came across it but I've found it to be very effective and you may find it works for you - just put mindfulness for chronic pain into google if you want to find out more.  It might just be that the relaxation effects of mindfulness could help in themselves...

    Good luck and best wishes.


  • AndyGT
    AndyGT Member Posts: 412 Pioneering
    Thanks Emma.  I'll try the books.  I know what you mean about explaining it.  No matter how hard I try go explain whst it's like I never feel like I quite get it right.  I keep trying to avoid over elaborating and not making it sound too bad.    As well as having to come out of the police I had to stop all my activities and lose my identity.   Since then I have not found something that can take its place. After all these years maybe I should have.

  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    @AndyGT it sounds like you are now attempting to find your new identity because like you say one minute you are an active policeman who did all sorts of sport and that was who you were, and the next minute WOAH... having to reinvent yourself is no mean task but I do believe someone can do that even way down the line... but don't beat yourself up about the 'I should have done this by now' just accept that you are trying to do it now and that's great!?
  • Misscleo
    Misscleo Member Posts: 647 Pioneering
    Your post sounds like i wrote it.
    With a few differences of cause.
    Everything you say about the changes in your life after uour avcident i know about.
    Wr in a regret about the loss of our life. its like mourning what we were and the prison wr in now.
    Theres no easy answer we have ti go through it and hope theres a new life on the other side that we can make our own.
    I wish you the best of luck 
  • AndyGT
    AndyGT Member Posts: 412 Pioneering
    Thank you for your wishes. It is most appreciated.  I hope that whatever you are going through at the moment will result in the life you want and deserve.  Thanks again...
  • 8954
    8954 Member Posts: 6 Listener
    Andy gt   i get a lot of pain in my back and pins and needles in my legs im not as bad as you  ive been told i have Scoliosis  Disc degeneration  Squashed nerves Crumbling discs  Bilateral sciatica All in my back Plus Osteo and Rheumatiod  Arthritis in my hands hips and knees Theres not enough room to name all my tablets Some days i cant walk the pain clinic said all they could give was Morphyne i said no i will stick with the pain i was.nt going down that path ive seen othe pain clinics they told Morphyne would do no good  i use a walking stick all the time  I cant sit in one place no longer than 10 mins before i have to move or try and stand  if i dont im in total agony Ive been told there is nothing can be done for my back  Dave
  • Misscleo
    Misscleo Member Posts: 647 Pioneering
    Morphine is the strongest pain killer.
    So if your getting strong pains anywhere.
     the med to take is morphine
  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    Morphine is also a very powerful drug, with side effects.  It is also addictive and there are negative implications if taken long term which include depression.  People who take it also develop a tolerance to it meaning they need increasing amounts for it to have an effect and there is a ceiling...

    Worst of all such medication is also ineffective for chronic pain.

    So ideally it should be a last resort and short term, but Drs seem to be issuing morphine/opioids more and more rather than taking a multidisciplinary approach presumably because of cash limitations within the NHS... if you are interested this is a good article on the subject:
  • AndyGT
    AndyGT Member Posts: 412 Pioneering
    Thanks for the article . I'll read it and let you know. 


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