Dealing with chronic pain
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Degenerative Disc Disease

ByziByeByziBye Member Posts: 2 Listener
edited June 2018 in Dealing with chronic pain
( This is a little long, sorry)
Hi I'm Kevin just turned 38 and have suffered from Degenerative Disc Disease (DDD) lumbar and cervical which has caused nerve damage, Bursitis in both hips as well as pins and needles, numbness, weakness, partial weight bearing and complete loss of use of my right leg at times. I use those ergonomic crutches and a wheelchair oh as well as the various medications daily and the several injections for both my back and hips. 240mg Zomorph, 300mg Pregabalin, 15mg Lansoprazol, 100mg Naproxen, 4000mg Paracetamol and 20mg liquid morphine and 30mg Citalapram daily. It does bigger all!!! I now suffer from panic attacks, anxiety and blackouts caused by nerve damage and high meds.

There's the technical stuff out the way haha
This was apparently caused due to a fall I suffered 19 years ago and caused a ruptured disc which over time and uselessness of hospitals and doctors got worse without treatment which left me with very little option other than lifelong pain a condition that has progressively gotten worse and injections and meds as my only optional treatment.

It was a fab doctor who sent me to a top neurosurgeon in Newcastle which finally got a diagnosis and possible treatment but he left after a year and it was 2 years before another surgeon picked me up with constant harassment from me and then dumped again until my current neurosurgeon who I refuse to leave.

I now have a fantastic Neurosurgeon who I've been under for 10ish years and he knows me well. I had 6 lots of injections in my spine in Feb 2018 and just had more jabs in both my hips at Sunderland Hospital yesterday. ( 2 hospitals in 2 areas and I live in Durham lol)
Thanks to my back it's caused the Bursitis in my hips but over the past 12 to 18 months I've suffered from leg weakness, pins and needles in my legs feet and arms. It's caused me to have many many falls, several have ended up in hospital. The biggest shock was around 6 months ago when I started to loose complete feeling in my right leg sometimes pain but no other feeling (very strange)
I've spoken to my Neurologist who told me off for ignoring it and just putting it down to my back now I'm waiting for another MRI but it seems no-one wants to pick up the bill so I wait while they sort it out. 

My doctor has decided to reduce my Zomorph but has buggered up every repeat prescription and has again left me without Zomorph, what a plum!
She doesn't seem to get how debilitating and depressing this all is and wants to send me to Physiotherapy! We did all this at the beginning!

There are days I can't get out of bed there are others I'm almost fine and I can bare it. I have a very supportive family but I really feel that I'm a burden. I always worked up until 2009-10 forced out of work because I was taking too much time off, forces to stop driving and cant walk very far. To me it seems like this illness has taken everything away from me and recently although I've come to terms with this many years ago the doctor told me I'd just have to live with it! How supportive!

This is something from a medical professional I find disgusting. A few years ago I was diagnosed with Bowl cancer which was dealt with within 6 months so why can't more be done for myself and others who have to live with debilitating long lasting pain?!

I've read the other posts and admire and really do understand what your all going through and just how hard it can be. I don't want people to feel sorry for me but I think people need to understand more about what we all have to go through.
People see a young person as they do with me as if to say how come he's walking with crutches or in a wheelchair and doctors easily dismiss us.

Yes it's something we all have to live with and I wish you all the very best for the future. Feel free to comment or get in touch.

Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @ByziBye Pleased to meet you. First of all thank you for sharing.

    I am sure all of the community understands your situation. We are a supportive community and share and care.

    You will find friends here to listen to you. Give you hope and inspiration and give you warmth and kindness.

    I myself joined here last year and have many new friends.

    Also let you know am from the North East so a warm welcome from me personally  to have you here.  

    Please can I say anything you wish to know or comment on. Please do plenty of threads on posts on specific conditions which has loads of people like your good self.

    Always here to talk chat debate and listen

    Take care

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • Kate234Kate234 Member Posts: 1 Listener
    Hello I am 36 yrs old and your the first person Kevin I know has the same condition as me degenerative disc disease, I found out in 2014 when my first disc prolapsed I was told after my surgery which left me completely numb in my left leg as they failed to get me seen sooner, I struggle every day with chronic pain even though I am on pain relief very similar to you, and I was also told that it’s fate that this has happened to me as they said if I smoked or drank heavy then they would understand why this has happened, then my second disc prolapsed in 2015 which then I had another emergency operation, I was also told there were nothing they could do and I just need to look after my back as it’s like a sheet of glass and it’s just something I got to live with, I was having 8 injections in my back but the NHS have stopped these now so I am back to suffering more, anyway I just thought I would say hello and I hope your doing well and sorry for the long post
  • caroleastoncaroleaston Member Posts: 2 Listener
    Hi I also have degenerate discs and also have COPD also diabietes and spondylitis of the spine and also have a lot of pain and on morphine so I no how you feel and for years I went through getting looks as if she's not that old how can she be disabled ... err I'm disabled is there an age limit on being disabled didn't think so,  I'm now working fifty still in loads of pain on ventilators to help me breathe and so depressed all the time stuck in the house sorry about this everyone my first time time posting thought I'd get everything done in one go thanks for listening xx
  • caroleastoncaroleaston Member Posts: 2 Listener
    I like to add I'm not working I'm disabled that was was phones predictive spelling lol xx
  • ByziByeByziBye Member Posts: 2 Listener
    Thanks everyone for reading my very long post. It's hard as you guys know to really sum it all up and write it down short especially when one thing leads to another.
    I came to terms a long time ago that I would have this condition for life but truly didn't think it would take so much of the simple things away.
    The flippant remarks and attitude from doctors is disgusting. I've never smoked barely drink and I was originally a nurse so helped everyone else so it's now very difficult to ask for help myself and I wanted and expected to still be working which I loved.
    The hardest thing for me at the moment is depression which I can imagine you've all suffered at some point and it's difficult to break that cycle when your unable to do sometimes the simplest of things.
    I'm glad there are others I can talk to who understand how it feels.
    Thank you to you all so much xx
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