Calling Lumbar Disc Sufferers...i need to ask some questions...

[PavlovtheCat]

Its me. again. if you are reading this you have probably read some of my umpteen posts about poor old me and my back. feeling very sorry for myself, and yet know so many of you have it worse than this.

Anyway. My back has 'gone' again. However, this time, as well as lower back pain, I have also had a pain in my neck/spine which has eminated into my head, across my right shoulder, and the nerve pain has followed it there into my arm and fingers. It reminds me of when you pull a muscle or something sleeping funny. And then as i have been thinking of this, I remember that I have had this a few times, but not ever connected it, just put it down to sleeping badly. I get a 'clicky' neck a lot too.

So, never gave it much thought, but as my back has been painful so has my neck/shoulder, and the pain in my arm and into my fingers has been at times almost as bad as the right leg sciatic pain, and it certainly feels the same type of pain.

so, given that my MRI has spotted 'several' disc bulges, could this be something that could be a problem higher up too? does that ever happen? could they be linked, or a seperate hypochondriac type problem? The MRI did not go that far, only did lumbar region.

The pain in my neck has subsided now, likely due to all the powerful drugs I have been taking, but the sciatic type pain comes and goes down my arm into my hand/figners intermittently, although nowhere near as bad now as my current sciatic pain.

so thats my first question. is neck related to lumbar pain? or, can it be? (i think I am worried it might be degenerative? this can affect all discs can't it?)

next is:

is there any complimentary treatment or therapy, or food/supplements etc I can take to support helping my discs go back to where they should be/get stronger/stop my back going again. I don't want this to keep happening, as it is affecting my life so badly now. I can't work at the moment, I can't clean the house, pick up my children (esp my 2.5year old), lie down with them. I can just about drive the car. I can't walk far without it hurting, stand up for long without it hurting, but surprisingly I can sit down for a while. I of course will continue with the usual route but nothing seems to be being done for my back that will help - injections not worked, acupuncture not worked, MRI shows no nerve entrapment (think the results might be a little different right now) so nothing surgically feasible. What else have I missed? other than drugging myself up on codiene and diclofenac?

Anything that can help, i am willing to try.

Hey reenie, yes I know what is wrong now, well according to my last scan, but not convinced about it being accurate now. it is more than there appears to be nothing that can/will be done apart from some cbt and it is frustrating. I just don't want to be in pain, albeit low level for the rest of my life, just because that is what I am told. I want to fight it a little first. but, it seems many people think I am simply over reacting to it all and have to just accept that a) its not really that bad and b) this is just how it is going to be its like going around in circles. I know where i want to be going (neurology/neurosurgeon) to discuss my future plans, but there are barriers and I can't get past them.

I am just so sick of having been so active to being able to do so little before I have to stop. I try to remember that I am so much better than I was, mostly walking straight, and from an outside perspective it would appear I am ok now. But, for example, I carried a bag with some birthday presents in (bottle of wine, some nice dinner goodies) and I could not do it from the beer garden to the car (hardly any distance). This evening I have potted some (3) small plants, one into a slightly bigger pot, not huge at all, and i picked it up and it impacted on my back and leg, and although my back has not 'gone' i am now in so much pain I have had to sit down with legs up and going to have to take high level of cocodemol to sort the pain . Went to the beach on my birthday and just watched the kayakers and surfers in the pouring rain and fab surf. two years ago i was in there with them on my birthday.

I am so sorry to hear you are suffering so much , and have had infections, that just sucks. what are you having done this time on your back that means they go through your abdomen? i think you have said before, sorry if you have! you are having such a tough time of it. when is the op planned for?

Hi Pavlovthecat, Sorry to hear that you are going through this. I can't add much other than that having gone through a similar situation myself I think you are certainly on the right tack to try and see a neurologist so you can hopefully avoid or at least limit long term nerve damage. I hope you get through whatever barriers that you are facing in this regard.

Hi Pavlov,
I understand what it's like going from being so active, able to walk as far as I want, able to do all sorts of things that I didn't have to think about it.
Now, I can't walk, I can use crutches to transfer (I'm thankful some feeling has come back below my waist) and use a wheelchair. There are lots of things I can't do what I use to do. But I have to try not to dwell on it and concentrate on what I can do.
My pain is really really bad too. A lot of timed it confines me to bed. I could easily stay in bed all the time but I have to really fight it and change my mindset. I think of the times I've nearly died, and how precious life is, and what things I'd like to do, and how I want to be happy. So for example, even if pain really bad, I dose up on morphine and fentanyl, and i go out to do what I wanna do. In march, I wanted to go to the zoo with my baby boy. So even though that day I can't predict if the pain will flare, the days before I must prepare and rest as much as I can, I must also plan to keep the days, the week after the trip free to recover. I might also ask my mum to keep part of the day after free so she can look after Cody while I'm in bed in absolute agony, crying and screaming.
Going out doing what I wanted to do, made me happy, but then I know I will suffer afterwards. Sometimes I question was it really worth this extra excruciating pain. But if I didn't do this, I'd never be able to do anything I would enjoy.

In a way, it's like grieving for the life you believed you would have, the hopes, dreams, ideas, are no longer what you thought.
My life completely changed 6 years ago at age 20.
I had good gcses and a levels, and wanted to be a dentist. I missed out on my grades I needed (AAB but got ABB). So I went to uni to do another degree and planned on doing dentistry afterwards. I also had 2 part time jobs too.
Then this all changed. I had to leave my jobs and uni. I had to face never walking again and a life of debilitating pain, and becoming dependant on everyone around me, I was like a baby again. Having to have nurses, and my mum wipe my own bottom, and do all sorts of very intimate personal things, I really hated.
I've progressed slightly, that I'm becoming and still learning to be more independent.
It was hard and still is watching other healthy people my age and older doing things I couldn't do.

Since this, I've become even more aware of life and death, and the smallest things most people take for granted.
I do my best to stay positive and I try to concentrate on the good things and the things I can do.
I struggle all the time with this, trying to be positive, and accepting this is for the rest of my life. At times it really gets to me, but somehow I find another positive, and it keeps me going.

I'm grateful that despite the excruciating pain and other horrible debilitating symptoms, I can find some beauty, love and compassion in life. And this can be, being able to listen to the birds tweeting outside, feeling the wind upon my face and hair, a warm embraced hug from a friend or loved one, the stunning sight beauty of nature, and so on. I'm so grateful that my illnesses and conditions have made me appreciate the most basic and most important of things.

Can you tell I'm trying to in a positive mood at the moment?!

What did they find your problem to be? And what barriers are stopping you seeking orthopaedic/neurology consultant?

The op is going to be a anterior and posterior fusion.

Pavlov I'm on my phone but I've recovered from a nasty L5/S1 injury. As soon as I am near my home computer will write you a longer post. I have some thoughts. Hope you're doing ok.

Had a small relapse from yesterdays exertions [ha]. went to work, did ok, but not able to straighten, ended up in tears at the end of the day due to continued obviousness of my pain and too much sympathy/being like a goldfish bowl being stared at, questions asked, and being in too much pain and not able to take my full dose of painkillers.

So, several colleagues told me to go home and not come back to work til i am actually ready. But I have my stage 1 disciplinary for meeting the trigger number of absences. So I am going to dose myself up and go in.

reeny i feel pretty crap about moaning about it all when you are struggling so much with your stuff which is so much worse. I should count my lucky stars. My 'summary' is 'discopathy of all lumbar discs in particular l5/s1 with an annular tear not impingeing on a nerve' - l5/s1 is reduced in height due to dehydration, the tear is broadbased central tear and is indenting the dural sac. the other discs are protruding/dehydrated. Uneven endplates whatever that means. It is not that bad I guess. Even though it feels like it is. I am sorry I have not been on the other thread, just finding it difficult to focus on posting in too many places. Not very supportive of me

And I disagree about the nerve impingement, certainly now. since that MRI at the beginning of May I have had a huge relapse of now 5 weeks which I am just simply not recovering from quickly, there might not have been according to the MRI but there is now.

And now. I have just had enough. I just want to go to bed and stay there.

I cant see how exercise and carrying on helps. it is making it worse.

OK, here I am.

Having read the whole thread, I understand what a lot of the medical professions are telling you. I also understand why it appears to be conflicting. But in fact the only point at which I think you've had poor guidance has been the bedrest advice. Ten years ago that was the consensus but now it's thought it makes the problem worse.

I also think you'd be much better off with a physiotherapist than an osteopath. Not just because your osteo appears to be rubbish - but because in fact a slipped / herniated disc can't do much more than recover slowly, and you need work on the muscles to support it as it does. Not including cortisone injections or surgery of course - of which more later...

The best thing you can do to aid recovery is to build up the muscles in your back which are holding your back up. Bed rest will make those muscles atrophy - and faster than you think. Your pain relief schedule is aimed not only to reduce inflammation, but also to encourage you to use those muscles and hold them in a normal way. Physio will give you exercises which will work on those muscles without causing harm.

Not holding your muscles / frame in a normal way can cause further problems and I do wonder if this explains the other pain you have been having. In my own case, I had disc pain for a year and then unbeknownst to me the disc did improve, but the pain was replaced by (identical) muscular sciatic pain. I might have continued with this indefinitely had I not talked to a colleague who convinced me the pain in my upper buttock especially indicated a muscular issue. Back at the physio it turned out I had been standing on one leg - I swore I wasn't but looking at myself in the mirror it was clear that I was. Three sessions of deep tissue massage later and I was an awful lot better. I still have some pain if I lift heavy things but I can go about my life again. The fact cortisone injections have been less than successful leads me to wonder about a muscular issue as well. If it is - it's very good news as it can be treated quickly.

As far as surgery goes - only a spinal surgeon can tell you if surgery is a good idea, certainly not an osteopath. In fact, my surgeon told me the extent of the herniation is not always an indicator of whether a microdiscectomy is required - often larger herniations break off as they calcify (and so problem solved) whereas smaller ones do not.

I think you do need to take your painkillers - not doing so will create a vicious cycle where the pain becomes worse. Also - how's your mattress? If you have an old one I'd consider getting the best one you can afford. And if you're under 16 stone, make it a medium rather than a firm so your hips sink into the mattress when you're on your side rather than staying on the level, which leads to a bend in your spine just where you don't need it.

Oh - and drink lots of water.

josie thank you so much for your post. I completely agree about not standing correctly making things worse and I am trying to get myself back into a normal standing position. I am very aware that I am standing more on on leg than the other, and try to force myself back into walking normally but the pain is immense. I have finally got a physio appt, for 2 weeks time. I am hoping that this will give me some more definite guidance for exercise and i really could do with some actual hands on stuff, so positive to hear that this route my help me get back to a good posture. I have almost completely stopped exercise due to the pain, and I can see that it is as you say a vicious circle, and I need to get on top of that again. What about swimming while I wait for the physio which is not for 2 weeks? i want to do something but afraid I will do more damage if I don't wait, but also know i should not wait.

How long did it take your disc to repair?

GP has given me tramadol, not taken it before now, but he thinks it will help more than the codiene. He wants me to take them for 2 weeks at least, after I said I would them a try for a couple of days! spoke to him about the gabapentin and said that it did help a little but not as much as I had hoped and the side effects were that it wiped me out. He said that the starting 300mg is the bare minimum and he would anticipate this going to 900mg before i would see real improvement and agrees that if 300mg floors me 900mg would make me unable to function. I do know I need to take the meds, and realised that at work properly yesterday. But, there is a pay off isn't there? If I take the meds, esp gabapentin (unsure about tramadol yet) i can't work. I don't want to lose my job.

GP is going to review my casenotes and make an assessment about next steps as he finally agrees this is going on too long now and I am not recovering as quickly as I should. I told him how I feel like it seems that this is it now and I have to find a way to accept this, which upsets me, and for a change he was quite determined in his manner. he told me not to accept this, I do not have to, and that he needs to have a think. I really suspect he knows what avenues he wants to go down but wont tell me for some reason. He seems to have his hands tied as he appeared unwilling to send me packing again but unclear about what to tell me. Some concerns expressed that the tear might have got worse/another disc has ruptured, but he was reluctant to give a real view on it right now.

Another week off work. He said there is no way i should be at work if I can barely walk into the surgery, and was quite cross about it! He also thinks I went back to full hours too soon, and will be recommending a phased return when I do go back.

OK. I do think he needs to refer you to a consultant, I'm not sure why he's holding on to this himself.

I was in pain for almost exactly a year. The pain was childbirth-like at first. Truly awful. And then I couldn't really walk, or put my own socks on. And then I sort of could, and lived for my next dose of painkiller. And I stayed like that for a long while.

I utterly empathise with the feeling that your best years are behind you. I felt completely like that. But you have to believe that they're not. Because the disc has such a very small blood supply it heals verryyyy slooooowwwly and there's not much anyone can do about that.

Comments that it's possible to have a herniated disc without pain aren't really helpful. It all depends on which way the disc squidges, for a start. If it squidges outwards, or sideways, it won't be irritating your spinal cord.

But it is the case that your mind has more control over pain than you'd think. Fear exacerbates pain, as does stress. Childbirth is a case in point. In fact, I think I understand more about what people tell you about childbirth now - as the stuff you get told about managing the pain in childbirth was quite similar to what you get told about managing chronic pain. Think about how you feel about - say - a painful spot. Once you've seen it you're much more aware of the pain than you were before. So when people say there's a psychological element to pain they're not belittling what you're going through, it's just the way pain is.

I had dicoflenac, codydramol and diazepam. I avoided the diazepam at work for the same reasons as you but always made sure I took some when I got home.

josie that is exactly how my pain has been! at christmas, the pain was just like childbirth! i remember my MIL driving me to the pharmacy to get my prescription (long story why she did not go herself!) and every movement in the car triggered what felt like a contraction, and every movement i made was the same and i could hardly move, and eventually, that intense pain subsided and I was left with the longer term pain that i managed with meds. Then in the last 5 weeks, i was backwards, unable to move, although the pain was not as childbirth like as at christmas, it has not gone back to manageable, well it did but only for a few days to be honest.

How long did you take diazepam for? i am very reluctant to ask for it, for fear of looking like i am an addict! I also am taking diclofenac x 3 daily, have been for a while now.

I am not sure why he is holding back. I asked him what else can be done if I am not to accept this as my lot, and he said 'i need to think about this' and that he would review my case this week when he case time to look at my notes. It is not that he has no clue about back problems, as he clearly understands the MRI results as he went through them again with me, and has explained them to me in more detail than the osteo who referred me, so it is not that he does not know what to do i am sure of it. He said there are more options now, but wont tell me what they are, will go through it all on monday.

Ok. Well, push hard for Physio at the very least. And stay in touch x

Oh - I had the diazepam on prescription for the whole year, but as I mentioned above I only took it in the evenings.

And - no more lifting of DC. Hugely tough - but they need a healthy mummy. You can do it in the pool though! I had to stop carrying DD at 18 months. It was very tough. But we worked around it - she was in a cotbed early and had a bathroom step in the kitchen so she could climb into a booster chair (rather than a high chair) herself. She soon adapted.

you are also right about the childbirth and positivity. I had very little bother in terms of pain and managed it pretty well. In particular I remember talking to DD when I gave birth to her, telling her how well she was doing, walking up steps through contractions and back down the other side. I remember telling myself that this pain was good pain and it would not last, and feeling remarkably positive and in control. DSs birth was more painful and quicker and even then I felt positive about it despite asking for pain relief a million times Not saying it did not absolutely hurt, either time, as it really did, but i never felt scared at the impending pain, more excited, and focussed on the purpose of it when it did hurt.

I think with this pain, there is no good at the end of it, and I can't see that finish line. And I do fear, you are very right. I lay in bed for another 15 mins this morning as I knew it was going to hurt to get up so i put it off.

I am finding the not lifting DS very difficult. DD is getting it, she has been so lovely. She 'helped' me out of the car yesterday and has been massaging my feet, and she no longer asks to be carried, I will hug her and she will say 'don't pick me up remember!' she climbs onto a chair now and I give her big squeezes that way instead.

But DS is only 2. He is starting to learn, he will hold my hand more now when he wants me to carry him and I ask him to hold my hand instead but sometimes he refuses to accept that.

Hi Pavlovthecat, I'm glad to hear that you have a review again with the GP. I wouldn't be leaving the surgery without a referral to a specialist if I was you (as I didn't in my own case thankfully). It is difficult not being able to lift the little ones, but they do get used to it very quickly and your friends will help out when they are about too I'm sure.
I'm not sure on the rest thing mentioned by someone above as not being good. it was recommended (in the last 5 years) to me and it works for me though I am sure every case is completely different so I would say go with what you have been told.

Goodluck with your review.

You need to persevere. The disc heals so slowly - you need to give yourself every possible chance. DD knows that Mummy has a poorly back and that's why she can't have a carry. I kneel down when she wants a cuddle and she stands on my legs. You may find you have to carry on taking the pushchair out for longer than you did with DD.

josie we ditched the pushchair months and months ago! as it was big and heavy and DS walks everywhere we just stopped using it, and it has been too big for me to get out of the boot. However, I realised I needed to use it again so we have in fact bought a cheap light stroller about 3 weeks ago, and DS is quite enjoying the novelty . I used to carry him in a macpac, if he needed to be carried, but that way of him being transported is long gone

Chin up - we are where we are. It's much more important to your DS that you're able to run around the garden playing football with him this time next year. I know how down you're feeling at the moment, how frustrated, how you feel that other people despite being sympathetic don't really understand how stressful and misery-making it is to be in pain 100% of the time. But you will improve, you have to trust that you will.

I feel more positive after taking some tramadol today well that is quite a nice drug isn't it certainly helped me feel less horridly groggy and yuck like I did with codeine. It is lighter and fluffier and while I am more woozy on it than on codeine, i feel like it looks less obvious! but I might be wrong . luckily both children were already in after school club as DH is working this evening and I was due at work, so i left them in it to see how this new med affected me. Luckily i did as at 3pm when I would have got them if not in ASC I would most certainly not have been able to drive. I just lay here goofing looking at the sun coming through the window.

And, not sure if it is psychosematic (sp) but the pain feels a little easier to bear. Sort of like, I can feel it but it does not hurt as much, like it should hurt but doesn't. Not sure if that makes sense.

But anyway. I feel perkier.
Thanks for coaxing me a bit today. I was wallowing this morning.

Any time. PM me if you need to rant about how bloody unfair it is talk

Hi Pavlov, moan away, I don't mind :-) we all need to time to time so no need to apologise.
I think you should definately push to be referred to a spinal consultant just so they can review you. If your current GP won't, can you see another?
How old is your daughter? She sounds so sweet and understanding.
I'm glad the tramadol is helping you.

I find it hard knowing I won't be able to walk and hold my boy's hand, or run around playing with him.
Alternatives though I can 'roll' around after him (when I'm well enough). Although I can't do certain things, I try and make it up in other ways.

I want to get myself a hand cycle (so expensive though) for my own benefit and independence and enjoyment, but also when my boy is a little older, I can go over the park with him both on bikes (again this is all dependant on how well I am and the pain). But I'm determined of there is something I really really want to do in life, I won't let it stop me!