Cerebral Palsy
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help with long term pain from complicated ddd.

hortigirlhortigirl Member Posts: 4 Listener
edited October 2018 in Cerebral Palsy
Hi i was born with a twisted spine and hypermobility luckily i wasnt paralised as was thought when i was born however over the years iv developed other problems progressively worsening. last couple of years have been the worst. i push my doctor for some help reluctantly he sent me for an mri this showed significant degeneration in all the cervical discs in my neck plus narrowing of the central canal and reduced movement. the start of degeneration in my lower spine. i have managed to get minimal help my doctor asking me to just carry on after protest i was sent to a physio but told i was only eligible for 3 20 min sessions. i came away with a couple of exercises for my neck which help very slightly. i am 31 and used to be a very physical person i dont wish to give up physically as i know this worsens things in the long run and i work in horticulture and diving. i am in constant pain in my neck and back even waking up stiff and sore. with flare ups that give me pain through my back arms and head to the point of giving me blinding headaches. my lower back flares with sharp stabbing pains. im after help with what i can do long and short term. its affecting me mentally and physically. im on a limited budget.


  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @hortigirl
    Im sorry to hear you are having such a tough time.  Do you see anyone in a specialised pain team?
    Senior online community officer
  • hortigirlhortigirl Member Posts: 4 Listener
    hello no i do not i havent had such an option 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,856 Disability Gamechanger
    Hi @hortigirl, perhaps you could discuss this with your GP and ask to be referred? You can find NHS pain management services here.
  • hortigirlhortigirl Member Posts: 4 Listener
    i will try speaking to a different doctor my last one basically told me to get on with it 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,856 Disability Gamechanger
    Oh I'm sorry to hear that @hortigirl. You're always entitled to a second opinion, so do try speaking to another one. I really hope they can help!
  • hortigirlhortigirl Member Posts: 4 Listener
    thanks hun much appreciated. my old gp was utterly useless missing diagnosis when i move my current one seemed brilliant but they have been little help with this. ill push more
  • seasideMarkseasideMark Member Posts: 9 Listener
    Hi hortigirl, someone pointed me in your direction from my post regarding DDD, which asked the question of keeping weight down when mobility is an issue. I was early 30s when i first started to suffer spasms and debilitating pain, i tried everything from chiropractor (avoid like the plague) to paying for private physio to try and keep me working, after about a year i was sent to a specialist and after an MRI, dignosed degenertive disk disease in most of my lower back and was crushing nerves. I was told it was too dangerous to operate and could possibly cause more damage, so i was passed to pain management, which i suspect is where you will end up, and 13 odd years later im still being given different combos of pain relief from morphine to fentynl and oxycontin combined with anti depressants and nerve medication.
    One of my biggest issues was accepting i could no longer do the things i used to do and  i would never say give up what you love, but at some point you have realise you have limitations or you'll drive yourself and your family round the bend.
    Anyway, as someone whos gone through the process and still going, I'd be happy to answer any questions if you feel it would help.
  • l133ybl133yb Member Posts: 2 Listener
    Hi hortigirl, i can completely sympathise with you with the pain management of DDD. I have it and have suffered for 15yrs. Going from an active mum to one who spends 60% of life in a wheelchair during summer to 90% during the colder months. At the being I had a consultant tell me "i didnt have cancer, i wasnt going to die so stop moaning and get on with it!" 6 yrs ago and going through progressively stronger pain killers, now on morphine, i was told by a g.p "to get out of my wheelchair and ride a bike i d feel alot better for it". Even though my discs had degenerated to the point of an 98yr old person. And have worsen since. I ve had injections that only helped with the sciatica in both legs for max 3 weeks but can help up to 3 ywars in some ppl. I ve now had the nerves quaurterised but still suffer in great pain. I m losing my balance and i m scared to go back to my g.p. i suffer with lots of other health complecations which dont help however dont give up push,  shout, scream, kick up a stink if you have to. Please push to see pain management clinic, they understand and above all they listen to you as an individual person. Without my consultant i d hate to think where i d be today.  Good luck its a hard road but with the right ppl it does get slightly easier when the pain is managed xx
  • deano5278deano5278 Member Posts: 38 Listener
    Hi there I'm sorry I'm not a big talker I'm really trying to see what help is out there I'm 32 years old and was a carpet fitter for 13 years until about nine months ago ago I got put on limited capabilities only , I am parsley deaf in both ears having to were hearing aids with are degenerate and yesterday I got my results back for my back I've been suffering with pain like made alover my back and shoulders my results have come back as follows c5-6 degenerate disc bulge with moderate foraminal stenosis and chronic looking involvement in existing c5 never .
    Also t7-8 and t9-10 degenerate disc osteophyte but not spinal stenosis or never compression .
    L3-l4 degenerate disc bugle but not nerves or Spinal stenosis. Thank dean
     I need helpwithbenifits if anyone can help im lost 
  • deano5278deano5278 Member Posts: 38 Listener
    aslo everyone I see with ddd uses morpthine my doc still will not give me this pain relif ive argue like mad with him for it and tells me it is usless for my condition 
  • seasideMarkseasideMark Member Posts: 9 Listener
    deano5278 said:
    aslo everyone I see with ddd uses morpthine my doc still will not give me this pain relif ive argue like mad with him for it and tells me it is usless for my condition 
    Thats the difference between pain management and doctors. In my experience, pain management are all qualified anaesthetist and can administer different combinations of medications, including morphine, which works great for pain, but completely knocks you for six.
    Ill never forget what my pain management doctor said to me when he prescribed my first controlled drugs (i was pretty upset), he said "if you had asthma, would you not take your pump, or if you were diabetic, would you not take your insulin, the medication i am prescribing is what you need for your condition" i felt a bit better, but still taken a long time to accept my limitations 
  • deano5278deano5278 Member Posts: 38 Listener
    I am not under any pain management or anything at all just refferls to shoulder specialist and rumotogist he's not spoke to me at all since I've had the diagnosis I hate him I'm in agony with it all 
  • seasideMarkseasideMark Member Posts: 9 Listener
    Thats not right at all, who gave the diagnosis?, they should be following up with some kind of treatment. As for your doctor, if hes not giving you the support you need, then you need to move on and find another.
  • nikknacknikknack Member Posts: 3 Listener
    I have had DDD following chemotherapy 17 years ago. Pain clinic were not good, told me to stop taking co-dydramol  but if I miss a dose I cannot move. I've been told surgery would be useless. Now each acute period is lasting longer and I only ever recover 75% of where I started. I was always very active so find the restrictions hard to accept.
    Am at the point where I would let them  chop my foot off if it would stop the pain. I'm very restricted, have widespread severe pain, can't get a job but my PIP assessment said I'm not disabled. 
    Frustrated by the system
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