DDD L3/4 & 5. What can I do?

I have been diagnosed with DDD for 2 half years. I have had physio/acupuncture/osteopath/medication/various nerve root injections & 3 epidurals. 

Im 44, manage to do a part time office job and get home. That's pretty much my life. I cannot walk for longer than about 5-10 minutes, the pain is then too much. 

It's hard too find anyone in the same boat on the Internet, quite a lonely place to be. 

43 Replies

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  • Well it's safe to say, most people on here are in that boat with you Oiroiroir; even to the point of it being at risk of sinking under the weight!!

    There'll be lots of people who've felt like you loneliness wise, one way or another,  so be prepared to not be in that 'lonely place' any longer 😊

    I too have DDD, have had three prolapsed discs requiring surgery and now have drop foot on one side due to the damage done by one of those prolapsed discs. I'm left with neuropathy in one leg, excruciating nerve pain and chronic pain from the scar tissue from the three lots of surgery. I've also got sacroiliitis on one side which I'm awaiting a steroid injection for, restless legs, depression & anxiety.

     I'm on a wheelbarrow full of medicationand have tried/am having numerous treatments/therapies. 

    I'm finding massage (with gritted teeth and Morphine) to be quite helpful; for a few days at the moment!

    RAYJAYC

  • Hi

    Thank you for your response. I so wish there was an "off" button for pain!  There is comfort in knowing you are not alone tho'. I have been having massage too on a weekly basis but I could not work out why I was ok while ha wing it done to a certain degree but then for the next week I'm in more pain. My osteopath says it's because I am on my front for too long and the pressure my spine is not used too. Everything seems to be trial and error. Any therapies etc you have tried or will be trying would be appreciated. 

    Hope you are having a "good" day. 

  • I get that 'post massage pain' too. It's lovely when you're having the massage and when I get up from it, I feel like I'm floating almost; but then reality & gravity kicks in! The next few days are sore - feels like my whole back is bruised but I think that's probably where she got some muscle movement and blood flow going to parts that are in spasm the rest of the time!!

    I've tried swimming; more treading water really. I can't get my head & neck up above the water line when I swim on my front so it's either back stroke, doggy paddle in an almost standing style or treading water. It's all exercise and muscle moving (as I call it!) so I felt I was being proactive in my treatment! I also used to get my head & shoulders up on the side of the pool (resting on my elbows) and let my bottom end just dangle in the water. I felt that helped loosen me up a bit too!

    The problem I had though was getting out of the pool and getting dressed; I felt so heavy (like you do anyway after getting out of water) that I felt it undid all the loosening up!!

    RAYJAYC

  • Hey Pal, 

    You're not alone at all. Similar situation to you. I'm 43, used to work 60 hours a week and have an active social life. 

    Now i struggle to make an appointment in the morning because I can't get out of bed before 11ish.

    At least mine only started in September ,don't know how you managed for two and a half years!!!! 

    I've had the same injections, total waste of time for me. 

    Just got out of the hospital yesterday from side effects from all the morphine, read your post and realised "someone else feels the same as me" 

    So even if my post hasn't helped you, yours has helped me. :) 

    Sorry you're suffering, but like the last person said, at least you are somewhere now where other people can empathise from a place of shared experience. 

    My biggest struggle is emotional. Not being able to look after my family properly. There are no pills for that. 

    All the best mate, hope things are looking up 

  • Hi and thanks for your reply. I could not take morphine and my GP quickly worked out that any opiod based drugs would have terrible side effects so I can't go there. That in its self is very annoying as the medication I can take is limited and not so effective.  If I'm honest I don't know how I have managed this long but you have no choice. I scrawl the Internet for ideas, things I haven't tried. 1 out of the 3 epidurals worked to lessen the pain by over 50%, this was my best 6 months by far. Although I still couldn't do all normal stuff, I could manage to take my kids to the local park ( I have twins 5yrs & 16 yr old) and manage to pop to shop. Mentally this made all the difference in the world. You may find some medication or something that helps you, try all ideas and avenues when you feel safe to do so. 

  • As much as it sucks that you can't take morphine for pain relief, at least you are saved from the side effects,  small blessings lol

    I've just been catheterised because of it. Morphine - 1 : dignity/self respect - 0

     I've only had 1 caudal epidural, but if you've had success with one after failure with others, maybe I'll try another  one. 

    I was supposed to see my surgeon Tuesday. But just got a letter saying is cancelled due to the doctor strike - cue rage! 

    You must have great kids, I think that is the worst part for me, not giving mine the time he deserves. 

    I'll take your advice, and start combing through all different avenues I can find. Well, maybe when I get up lol 

    Again, hats off for lasting years!!!! 

  • I do believe that when your mind is having a good day, it's your kids that do get you through. Then when I have a not good mind day, my kids are my frustration as I feel so low that I can't do simple tasks and things for them. My experience with the epidural is a little odd. My first one done under local did not work at all. The 2nd was done in a different place different consultant as the original one closed my case, said no more could be done! He did the epidural under general and this one worked. The 3rd, again same consultant 1 yr later under general again has not really worked,'maybe a little. I have my follow up apt on this 3rd epidural on Thurs. will be interesting to see his take on one working and one not so. ! 

    I would definitely give it a go, maybe with a different surgeon and under general, apparently the muscles are more relaxed making it better to hit the exact spot. 

    Good luck. 

  • Definitely not alone.  I've had two DDD for 15 years now and I'm 39. Working full time in an office job as I'm just too stubborn to give it up.  Tried anything and everything to keep the pain under control,  just nothing is calming the last 6 year long flare up though. 

    Welcome to our group.  Many people in the same boat to swap techniques and tricks,  have a whinge or meet up with folk in your local area. 

    Sarah 

  • Hi and thanks for response. I always feel I am too you for this, I can't imagine how you felt having had this for 15 years. I find it hard to believe the consultant when he tells me that a lot of people have DDD and do not suffer. Really?? I hope from this forum I can pick some ideas or tricks that I have not tried yet. Clutching at straws all the time. 

    Thank you for your time. 

  • There are ways to manage the pain with no pain pills by going to the gym and swimming.  I did this for 6 years and felt like I was finally getting back to normality.  Unfortunately this is only possible when I have the flare up under control and can return to a maintenance phase.  I've not had this at all for 6years now and getting a bit despondent to be honest. 

    Keep trying,  there are things that will help.  

    Sarah 

  • Hi. 

    Every time I'm having a "good" day I try and swim a little. I'm not a great swimmer, but I have a little go, then I seem to be in pain from it, so that puts me off. How were you when you first started to be ok enough to swim? I'm told that all people in pain with DDD have rubbish core muscles. Is this the only key to less pain, stronger core. 

  • It's a case of getting the balance between doing enough and doing too much.  You are best to do less than to push yourself into the pain,  then do a slow build up.  Start off by floating in the water a bit and maybe a bit of walking around in the shallow end.  Next time a little more walking and maybe some knee lifts by the side of the pool. Swimming is a good few steps further down the line.  As you do these gradual increases then you have less fear of the activity and less pain following 

  • Hello O,

    Sorry to welcome you here but very friendly fellow sufferers and advice is available...  Sadly no one has come up with a fool proof method for rehydrating discs... YET!  I'm still (foolishly?) hopeful something will come along but in the meantime many things can be helpful to keep going - you've tried the usual but from my experience what seems to happen is that everything gets bunged up in the time it takes to get to where you are so its worth pursuing movement therapies and work on body awareness to see what changes if any you can make to get unstuck or to optimise movement patterns, so for example, finding which stretches help which just make things worse... When you get in from work how do you get out of bad pain? Sometimes you need to stop doing any Pilates or core bs exercises as these can make things worse... The whole breathing/mindfulness thing can be helpful and sometimes if your mental health is going down hill then a course of duloxetine can be helpful... Forget the hoovering or get someone else to do it coz that's awful - pain makes people clench and grit teeth and everything else so well worth checking in with yourself daily to unwind these unconscious tendencies ... Stay in regular touch with GP as you may start to feel hopeless and they need to keep helping... I've been in pain for nearly 20 years now with ddd and I thought I'd have to stay that way forever which made me feel crazy so stay away from ruminating and catastrophising - you will have bad days but there will be better days too... Spring blossom, a cup of tea in the sun - all sorts of things in the moment can still be rewarding... I've just had some rhisolysis and woah atm (fingers crossed) I'm off those bugg**ing pills (day 3!) so woo hoo - still super stiff and in pain but less so and manageable (for me) ....  Also look after yourself - digestive health is important - etc.. Thinks about vitamins and mineral health - low levels of vit D can lead to disfunction etc... Anyway, welcome again - best wishes 😀🍀

  • Hi. Good to hear from you. I too just cannot believe that in this day and age we have to suffer with this condition. It does play with my mental state.  My mind cannot deal with that. The only way I can help my pain is by lying on my back very still for a while and the going on each side legs curled up. This obviously can't be done when I'm out or at work! I have not tried the nerve burning ( is that the same as what you have just had)? How was it done, I would be interested in more detail. I have leg pain but my big bug bear is the chronic lower Bach ache. I know I have put weight on and have now joined slimming world to try and help and this will also make me eat more healthily, I'm hoping this could just give me a boost in its self. Downfall is I can't really have wine :-( 

    Big fingers crossed that days 4/5-6 etc get even better for you. Keep in touch. 

  • Hi, I ve had DDD for over 20 years. I've had epidural injections and I've had surgery twice. I've been on many different medications over the years and discovered that some medications just don't agree with me.

    I've tried every alternative therapy but I now just have accupuncture to help alleviate the muscle spasms and Lyrica for the nerve pain and solpadol 30/500 for pain.

    I've had 3 children through this and got myself some pretty yucky pelvic pain as my pelvis separated every time. Ive had days when I couldn't go to the toilet and now intermittent catheterise. Yes it's a struggle at times. Many times I've thought I just can't carry on. But here I am. 

    I go the the pain clinic regularly and they have a myriad of medications to try and modify your pain experience. If some thing is not working for you then get it changed! 

    I do hope you find relief. No one knows how debilitating it is except you. We all experience pain differently and all react differently to medications. Don't be limited by your GP.

  • Hi

    Were all the op's for the DDD, what did you have done. when my GP refered me to the pain clinic it was to a consultant who carried out the epidurals. He doesn't really discuss medication. Can I see someone just about the meds as my GP says I'm on what I can be and that's it. 

    I find it so frustrating that because I don't have a cast on or a wound people can't see the real pain your in. Like you say no one really knows but yourself. Wouldn't wish it in my enemy.

    Chin up for a better day tomorrow. 

  • You most definitely can ask to see a doctor in the pain clinic for a medication review!! Most pain clinics have a consultant psychologist too so it's worth finding out about that too.

    It seems you've been 'left' to deal with all this alone totally. Most GPs, unless they have a specific interest in pain management, don't know an awful lot about chronic pain medication & management! 

    What meds are you currently taking and what have you tried before?

    RAYJAYC

  • Hi. I will look into this & hope my local hospital have something in place. I'm currently taking naproxen, amitryptaline, paracetamol, gaberpenten. GP says that's it as others are opiod based which I can't take. I also have to work part time & look after toddlers & teenager, so I need to be on this planet! :-) 

  • Why can't you take opioid based medication?

  • I too found that at the pain clinic Dr did injections  but has never reviews meds. My experience at pain specialist at different hospital was she would write on a piece of paper what regime to be on and then what I could change it to if that did not work. My time with good pain Dr reduced in time and when I asked to go back was told didn't think was anymore could be done but may want to be seen at current place. Yes they did do the injections but the follow up from those was phone call asking did they help yes/no and then possibly repeat in however many months or not if they were not helpful. I personally found the old experience of pain clinic better as I felt like Dr really understood my pain and was working with me to help stay on top of things. I wonder if where that was many years ago if the fact that services are under so much strain now that plays a big part in sense of not being able to have the increased contact ie appointments are much fewer and shorter. I don't know but certainly very different to my initial experience.

  • Hi. That's exactly it, I get a follow up appt 8 weeks after the injections for basically a yes or a no to if they worked!  I realise the back is a minefield but there has to be help surely. 

  • Hi again

     Does your pain clinic have a psychologist? Most do nowadays as a big part of pain management is the psychological aspect. Ask your GP or pain clinic doctor to get referred to one (if your hospital has one of course) as you're obviously in need of this kind of input.

    If your hospital doesn't have one, ask your GP to refer you to another hospital; as patients we have the right to choosewhich hospital we get a referral to. You can say you don't feel the current pain clinic is meeting your needs thus want to be seen by another clinician; almost a second opinion.

     Worth a try? That way you should get to see a psychologist and hopefully a pain doctor who you can actually sit with and discuss your current medication and what else you could take. They're the experts so you should get some clarity on what's best for you.

    Also, I see you're taking Gabapentin; may be worth switching to Pregabalin. The side effects can be tough as you increase the dose to find your therapeutic dose but I find it much better than Gabapentin.I'm now on 250mg twice a day and it definitely helps with the nerve pain. Some people will say the opposite and prefer Gabapentin but as you know, it's all trial & trial & trial!!

    RAYJAYC

  • This is me to a tee , I also have a bulging disc , which is squashing a nerve , some days can't get out of bed , due to sciatica, . I detoxed 1 month ago ended up in hospital, and still refuse to take any opioids or Fentynyl patches , , I now use panadine, antinflamatory antidepression, Diazapam and a sleeper at night, just to get some sleep . I find pool walking helpful , physio and acupuncture, the physio put a tens machine on my back, on full powe and I could only just feel it , so that's out of the question. It's easy to take all the tablets they give you, but in the end your body needs more and more, so you end up sleeping all the time, being on this site, you now know your not on your own . Wish they had a magic cure , I have been on the sick for nearly a year , and all this treatment is costing a fortune, but I couldn't work ( I'm a nurse) to much walking . Just take one day at a time and just cope that day , that's how I managed, . I'm going back to the pain specialist on Friday , trying to find a pain killer without opioids in it anyone got advice on that , elergic to tramadol, and a lot of nerve drugs. But my body needed a rest. Good luck , and remember one day at a time , that's how I manage . Terri

  • Hi

    Yes alongside the DDD on 3 discs I have tears in there as well. Sounds like we are on very similar tabs. I would also love more suggestions on medication. So much as I hate the stuff, I think it's because non of it really seems to work but if I could find something that helped give me a bit of respite but without being a zombie then that would be great! Right now I'm wishing for a better day tomorrow when my kids want to do planting in the garden, never gonna happen! But I can watch maybe for couple of minutes. 

    Take care

  • Hi

    So many of us in the same boat, comforting but alarming at the same time. Let me know if you keep up with any different pills as I can't take opioids either. 

    Thanks. 

  • I have looked at some of the replies.  I have no idea what DDD is.  I have googled for it.  You indicate massage helps for a short time.  You have said: "I have been having massage too on a weekly basis but I could not work out why I was ok while ha wing it done to a certain degree but then for the next week I'm in more pain."  This gives clues as to what is happening.  I may be wrong but the indication is that you are over contracting your muscles when you are using them.  It is possible that your posture is not balanced.  This will not be surprising as the medical profession do not bother on the whole to examine how faulty muscle usage contributes to pain.

    Muscles are at their strongest at their longest length.  The more a muscle is contracted the weaker it gets.  Muscle is designed to contract and has no means to uncontract only to stop contracting.  A muscle is returned to its longest length by other muscles pulling on it.  Hence the massage relieving the problem.

    One the problems that does happen is the positive feedback loop which can cause health problems.  A muscle group total strength is dependant on how many muscle fibres contract.  What sometimes happens is that in an action not enough muscle fibres contract.  The feedback loop recognises that that there is not not strength being developed and instead of more fibres being recruited more contraction is ordered.  The action gets weaker and the feedback loop requests greater contraction.  The muscle fibre becomes over contracted and needs help to return to normal length which is not forthcoming.

    Medication is not going to help with the above problem.  You are going to have to learn how to use your muscles effectively again.  Massage will uncontract the over contracted muscle.  You need to develop the skill not to over contract your muscles.  Yoga is worth giving a try over a period of six months.  You need to find a well trained teacher who can supervise what you do and ensure that you tackle the yoga exercises in the right way.

    The capillary that are connected with a muscle group to provide nutrient and remove waste is one blood corpuscle wide.  When a muscle contracts and remains contracted the capillary is compressed and nutrient to muscle is restricted and waste removal is prevented.  This can lead up to a build up of pain.  This is why pain killers work to begin with and then fail because the pain killer dosage has to be kept on being increased to tackle the increasing starvation of muscle and the increase build up of muscle waste.

    Hope I have been informative.

  • Hi

    Thank you for taking time out to respond. I get what you are saying and I have wanted to do either yoga or Pilates for some time but I cannot find a class which has a trained person whom understands back conditions. I am so nervous about any form of exercise/stretching etc. as I know one wrong move and my back will go into a very painful muscle spasm. It's a vicious circle. 

  • Thanks for the reply.  Its not about wrong move its about what to do when a spasm happens.   You are right to be nervous.  There is no trained person who knows back conditions.  A back condition is a symptom and a symptom can have many possible different causes.

    The name of the game is to develop the means of investigation the condition you have and developing the tools of observation.  The medical consultant only sees a snapshot of the time when you are with them.  You live with the condition in all its subtle forms 24/7.  What you did 5 minutes ago lays the foundation for what happens now.

    Mindfulness is a good tool for observation.  Meditation is a good tool for quieting the mind so that you can observe subtlety.  Its the subtle things that make the difference between more or less pain.  Alexander Technique is a good method for developing tools for engaging in different muscular and postural behaviour.

    Hope this helps

  • Degenerative Disc Disease.....

  • DDD , is degenerated disc disease, ( arthritis) in discs ) 😫

  • Degenerative Disc Disease doesn't necessarily mean there's arthritis there. The discs themselves, for whatever reason, have lost water, tear or prolapse thus have lost their 'bounce' so are unable to be the shock absorbers between the vertebrae. Why the discs 'degenerate' is unknown unfortunately; I'm hoping for a cure or at least some kind of 'replacement' some time soon.

  • Me too!!👍🏼

  • My Dr says I have DDD and I asked what causes it and he says it's a posh word for arthritis, which I have on L4/L5 L5/S1 2 bulging discs and they say that I'm still not going to be operated on , excersise, excersise, excersise. Iv had 3 steroid epidurals in 4 months , ( didn't work) well maybe s day or so . Now the facet joint injections, which IV had a scan recently in hospital and my facet joints are fine according to the medical Dr. Last epidural they hit a blood vessel I nearly punched him in the face, my body went into shock and had problems with my heart for a week , they said it has never happened before , but I had had monitors on for a week hourly BPs all the tests you can think of for your heart. And then told me it was just shock , and sent me home, now my surgeon won't put no more needles in my back , in case it happens again . Anyway find out Friday if they are going to do anything for me , I can't live like this . Addicted to water bottles . Today I'm having a biopsy of my back because it's so bad from all the heat, but it's the only pain relieve I got .... 

  • I so understand the 'heat' part. My lumbar region is so hot all of the time. My DDD is in L3/4/5 & S1/2 so it makes perfect sense but the heat that radiates from there is 'the talk of my family; I ask anyone who's got cold handsto put them on my back!!'

    I've tried all sorts of ways to keep it cool but nothing works thus far. It's a big problem when I'm out of the house as obviously I'm dressed but any movement like walking (again obviously) increases the heat and I can't undress!! I love the cold wind as I stand with my back to it and let it cool it down. Everyone else is wrapped up and trying to avoid the wind, and there's me relishing in it!!

    Now the warmer weather is here, it's such an issue for me; alongside everything else.

    Whilst I know surgery is a last resort (unless it's an emergency like all three of mine) for prolapsed discs, why won't they operate on yours? If you're getting a lot of pain and nerve issues, surely they'd want to do surgery?

    I understand your frustration about hearing "exercise, exercise, exercise" but in some cases this alongside physiotherapy is the best treatment if the discs are just (I don't use that word lightly) bulging. Some evidence somewhere is telling them that!

    Hope you get some answers soon.

    RAYJAYC

  • Went to the pain specialist , and because I won't take any opioids ( as I feel quite ill on them ) they have put  on ketamine lozenges .they are so good for pain in my back and depression , they stop the signals in my brain telling my body I'm in pain , you must try these, you can only get them from a compound chemist and they are for short term only . In 4/5 weeks I will be have a diagnostic facet joint branch block and if successful I will have medial branch Rhizectomy, neurotomy for the back pain and another epidural steroid injection for leg pain ( had 3 of these already) has anyone got any information or advice on a branch block or a Rhozectomy cheers Terri

  • Great news that you've found a medication that helps. Also really good that you've got a comprehensive plan in place! A lot to deal with & go through but what have you got to lose? I'm always worried if I haven't tried some treatment rather than regretting I'd tried it! Might be a bad philosophy but it's mine!!

    RAYJAYC

  • Wow, I thought I was bonkers thinking my lower back was hotter than hot!  I'm exactly the same as you RAYJAYC. ......so so hot, Sag T1/T2 - DDD in L3/4/5!

  • They were going to operate until they new I didn't have private hospital health cover,it costs a fortune here, now I wait in the system , and start at the bottom until their is nothing they can do 😫 Australia supposed to be paradise eh , terrible health care, but it's our fault not taking hospital cover ! Everything else we are covered for , typical eh ... 

  • Have you tried gabapentin its helped me with nerve pain im on morphine tablets twice a day im under Mr Furtardo at queen Elizibeth he had all previous tests by other consutants which may i say didnt give me a proper diagnosis im now waiting for spinal fusion which could of been prevented if picked up by past consultants 

  • I have tried gaberpenten in the past. It did help with the leg pain but didn't help with the back ache. The leg pain is quite intermediate now so I came off it as one less pill is great, I can generally deal with the leg, it's the back that I need some cocktail for. 

    Did you request 2nd opinion ? With you saying that you didn't get the correct diagnosis. 

  • It was my pain doctor he was working off 2009 mri scans i kept requesting he do another but still refused he just wanted to give me the injections but i refused as they had stopped working . It was my gp who requested a second opinion Mr Furtardo saw me at Queen Elizibeth Birmingham just looking at me he made his diagnosis ordered lots of scans and tests all came back with what he had told me in clinic im just waiting for my op thankyou for your reply take car

  • Hi Oiroiroir so sorry you are going through DDD like a lot of people of here I am also going through DDD as well as buldging discs and no space between L 3-4-5 discs with severe osteoarthritis in the facet joints as well as osteophytes rubbing on the nerve sheath.  I have been on Gabapentin for a lot of years and if not  So I can totally understand how you are feeling alone but by coming here you wont feel so alone anymore.  Looking forward to your posts.

  • An update from me. I saw my consultant and it was as expected a 2 minute appt as it consisted off "did the epidural work?" "No" "I will try one more time 25/7/16, if that doesn't work then I will refer you back to GP, I can't do anything else". So that has left me with everything pinned on that date! He won't do it any sooner either as he says it can only be done 6 monthly.    I also asked about medication & was abruptly told I'm a surgeon I don't know about medication.  So come Aug then, it's quite likely I'm going to be back where I started with the GP which, with due respect, knows little about DDD & the severity of how it makes me feel. 

    Good luck everyone with your journeys. 

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