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DDD - degenerative disc disease

tosh1064
tosh1064 Community member Posts: 2 Listener
Hi. I'm new to all this and wondered if anyone has experienced the pain associated with degenerative disc disease? 
I had my MRI in August (also the same day,  nerve conduction test). I am still waiting a follow up appointment with the neurologist regarding the results. 
However,  after a visit to my GP,  because of chronic pain in my lower back and now numbness in my left leg, she informed me that the MRI results were on file and there was evidence of DDD. 
I am struggling terribly with pain,  and finding every day "simple" tasks really difficult. 
I also have a disabled son (8yrs) with down syndrome and congenital heart disease, who,  me and my husband care for. 
My GP has said I need to wait for a follow up hospital appointment to discuss with the neurologist. 
Any tips? 
Many thanks
Jo. 

Comments

  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    Hello Jo and welcome

    So sorry you are having to go through this, life can be really harsh.
    Have you applied for PIP ?
    Money will not help with the pain, but can help getting things to make life a little easier.

    CR
    Be all you can be, make  every day count. Namaste
  • tosh1064
    tosh1064 Community member Posts: 2 Listener
    Thanks for your reply.  I wasn't aware that I could apply for PIP but I presume I will have to await for official diagnosis /confirmation from the neurologist? 
    Jo
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @tosh1064,

    So sorry to hear that you're in pain. Hopefully you'll be able to pick up some good hints and tips from other users. Do keep us updated with the diagnosis process!
  • steve51
    steve51 Community member Posts: 7,153 Disability Gamechanger
    Hi @tosh1064

    A very very big welcome to you !!!!!!

    It's great to meet you and I do hope that we can help you with this ????

    Yes living with pain can be very very difficult/hard at times.

    I don't find my medications helpful but I have too live with the "side effects"

    I do find "Distraction" very very use full indeed.
  • CockneyRebel
    CockneyRebel Community member Posts: 5,209 Disability Gamechanger
    tosh1064 said:
    Thanks for your reply.  I wasn't aware that I could apply for PIP but I presume I will have to await for official diagnosis /confirmation from the neurologist? 
    Jo
    First try taking the self test
    http://www.mybenefitsandwork.co.uk/pip/indexxx.php

    this will give you an indication

    CR



    Be all you can be, make  every day count. Namaste
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    Welcome.

    DDD is similar to what I suffer. I'd suggest requesting a referral to the Pain Clinic. Look into something called Pacing as this can help tremendously. The Pain Clinic teach it but I am sure you can Google it to get an idea of how it works.

    The main thing to learn is to not try to do what you have always done. Reduce your 'workload' and take breaks to rest. Life is so much easier when you manage the pain.

    There is no cure for DDD but it can end itself, it depends how many disks become involved. The pain levels will vary with the number of disks collapsing too. You will be told that you have to manage the pain for as long as it lasts and this can be the hardest thing to cope with. Constant pain and numbness make life very complicated.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • seasideMark
    seasideMark Community member Posts: 9 Listener
    Ive had DDD for 13 years now, diagnosed in 2005 with 5 collapsed disks, anyone who knows what one disk can do to nerves will understand the pain involved. 
    With my experience, pain management has and is one big experiment to find something that helps with the pain and you have to decide what your willing to trade to be pain free, although i never have been.
    What i mean by trade off is this, when i was given morphine and fentynl, it was almost like magic, pain was low and it felt like i could finally live with my condition, what they dont tell you, is you turn into a zombie, your almost in a trance like state and you sleep a lot, so i look back and feel i lost nearly 8 years of my life because all pain managements job was to help with pain.
    Epidurals are great, but only last a couple of months and you can only have two.
    Im now on longtech slow and quick release with gabapentine and robaxin. Im in pain, but its tolerable and i can hold a conversation. Im due a new mri to see how things are changing.
    I wish someone would have warned me how some of these drugs can affect your mental state, but to be honest, i was in so much pain, so thats all you focus on.
    Best of luck
  • Tiatruffle49
    Tiatruffle49 Community member Posts: 6 Listener
    I have ddd plus stenosis can't understand why Ur under neurology I'm under spinal yes so. Etimes they go hand in hand but neurology doesn't really deal with bone .. Ask to go to pain clinic but if you get a good one she should be able to give you an epidural or nerve root block or facet joint injections to see if any of that helps but spinal constant an do that as well I'm on pain patches but only after I've gone through different medication through the years but I'm allergic to so much stuff too... Pace yourself but also keep moving ask to go on pain management course which will give you ways to pace hints tips how to move do some exercise .. Keep Ur chum up it is hard .. But we're here if you need to talk  
  • deano5278
    deano5278 Community member Posts: 38 Connected
    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'm just looking for people with similar problems give there views to what I have as I really don't have a clue be the specialist did a poor job of that thanks 
  • poppy123456
    poppy123456 Community member Posts: 53,358 Disability Gamechanger
    deano5278 said:
    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'm just looking for people with similar problems give there views to what I have as I really don't have a clue be the specialist did a poor job of that thanks 
    Question has been answered on your other thread here. https://community.scope.org.uk/discussion/51168/ddd-degenerate-disc-desies#latest

    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Tony13
    Tony13 Community member Posts: 3 Listener
    I was diagnosed with DDD when I was and it would not work now 62 but suffer with chronic lower back pain and numbness in my left foot.
    I have had three mri scans and they show severe disc degeneration at the lower 4 levels and athritic facet joints.
    I take amitriptyline and naproxen every day as well as diazapam when my back locks up, I also take co-codamol most days as well. The hospital specialist in Derby said its pointless offering me an fusion because to many discs are affected and it would no be viable to do the operation. I struggle on everyday.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    @Tony13 I am so sorry to hear you are struggling. Can I ask, do you have support around you? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Tony13
    Tony13 Community member Posts: 3 Listener
    Thanks for asking. Yes, I have my family around that helps. I still work full time as well that requires me to sit and walk I feel better when walking and the pain is not so intense but sitting for long periods is a nightmare.
    I am starting to turn to pain medication now more regularly.
    Diazepam helps me through the day but I worry I will become dependent on it so only use if I feel I need to.

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    It's great you have support around you @Tony13 :) 

    Have you consulted your GP? They may be able to offer alternative pain medications if you are worried about becoming dependent. 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Tony13
    Tony13 Community member Posts: 3 Listener
    Hi Hannah
    Thats my next step or asking for another referral to the spine clinic.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    @Tony13 I hope that goes well and comes through quickly! :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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