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.

Pilates - I'm sure you may have tried this but I had terrible, terrible pain for 6 months with my herniated disc...I too had v young child (ds was 6 months when it 'went') and after constant pain popping I was advised to try pilates OR surgery....which was a very interesting option at the time. For the first 2 months of it I could do hardly anything for constant muscle spasms and a complete lack of awareness of my muscles, but after 10 years and 2 more children later (which finally sorted out the muscle spasms) I am a new woman. Pilates can give you your life back, but you do need to stick at it and make sure you go to a good practitioner (look on posture perfect pilates as opposed to classical - not good for dodgy backs) Good luck xx

Sorry not to read whole thread and apols if someone else has already said this but ex dh has nerve pain related to back issues (prolapsed disc, ruptured disc, then spinal fusion and underlying issues relating to a disability) and has been on pregabalin to help with the nerve pain.

The thing that doesn't take away the pain but helps him to cope (especially when the pain is horrific) is mindfulness meditation. He uses the Jon Kabat Zinn CDs on mindfulness for pain relief and it has helped him to come to terms with how things are with his body. (It helped him survive a night in hospital when morphine wasn't touching the pain). I'd definitely recommend them for anybody but JLZ designed a whole programme (described in a brilliant book called Full Catastrophe Living) for people living with chronic pain. It's been tried and tested but you don't have to do the whole programme to benefit.

Good luck. This must be so draining. I hope you can find some relief soon. And again, apologies if someone else has already mentioned this but I didn't want to read and run.

rookery is a prolapsed disc not a ruptured disc? I get so confused with the terminology. Mine has torn at l5/s1 and the other lumbar discs protrude. I have considered mindful meditation previously actually, not for back pain, but just for living! I would be interested in trying it, along with other things such as pilates.

I also realise I am not completely averse to CBT. My bother with it all is that the medical route has given me this as the sole outcome from my diagnosis without trying other things. I want complimentary, I want to help my own mindset, but I want to explore real physical options to support my recovery (if that is, in fact a word).

Sorry to hear your DH has so much pain with it

AFAIK, slipped and prolapsed are the same thing, and herniated and ruptured mean there's been leakage?

Could be probably wrong though

ok so a bulge is a prolapse? (this was referred to as a protrusion on the MRI report) and a tear is a herniation or a rupture? so many words for it!

Yep I think so? too damn right it's confusing!

Pavlov I think a prolapsed disc is when it's bulging out but exh was told that ruptured disc is when the whole thing explodes and you're left with basically no disc and all the toxic innards of the disc swimming about.

Good luck with trying to find a way through this...

rookery oh how absolutely horrendous for your XH! mine has not done that! It is torn with a bit of the innards sticking out. I guess, some of the toxin will leak out more from time to time? would that explain what causes a 'relapse' as I don't really know what is causing this to 'keep relapsing' and having me unable to move for up to weeks at a time. I know that up to xmas, it may be that the disc was not torn, but was bulging, and caught on a nerve, snagged it, I had pain, it stopped snagging, but certainly by xmas the tear occured as this shows on the MRI that was done before this last episode. So once, torn, why does it then flare up? what caused this last episode as the tear is already there? Or is it that as I move about, it can snag then unsnag a nerve? or is more 'toxin' released? I have so many of these type of questions and my osteo, well I can't imagine he would let me get so far as to ask the questions, so I want someone to fire these at who will know what I am asking. How can I manage these episodes properly if I don't know what causes them. I know its a disc problem, but what, if the damage is already done?

I am just going to go around in circles.

Pavlov I had a herniated disc at L4/L5 after having my dd and overdoing it lifting her in her car seat up 4 flights of stairs regularly. I couldn't do physio because of pain. Got a private referral to a back surgeon, he initially tried a steroid injection but like you, the relief was temporary.

I don't really understand the reluctance to try surgery, most of my pain was in my back but he suggested surgery was the best opinion given drugs/steroid injections just didn't cut it. I was in agony & could barely walk, it was awful not being able to enjoy my maternityleave with dd.

Anyway had a microdiscectomy about 3 months after first diagnosis & the relief was instant & so far, 18 months on at least, permanent. No faffing about with osteos, pilates, drugs etc. When you're in that much pain at such a young age I think you've got to get them to seriously consider surgery, you don't want to be cursed with this the rest of your life.

I get the odd twinge these days, when I do I just dial it back & take it easy. No drugs of any kind needed. My back surgeon was my saviour - please, demand a referral to a consultant.

thatsnotaknife that is a really positive story thank you for sharing it, its not that I want surgery, absolutely not, but I cannot, simply cannot sit here and accept that long term back pain is my future. I am so very active, not just the things I like to do, but my general state is running around at a million miles an hour. I am quite skinny despite eating lots of junk because I have high levels of adrenaline and always move fast. I am sooooooo frustrated at the slowness right now, even though I am moving almost back to normal, if someone was to see me, it is still much slower than normal, and I can't just do the whole multi tasking thing any more. DH has noticed I am hardly eating, but I am also not losing weight (i dont think) and I have said this is probably because I am not actually doing much, and not fast. I don't want this to be me forever. And I won't accept that. So, it might not be surgery, but I certainly want to explore all the options fully and not just be told flippantly that 'you are not a surgical candidate'. And maybe it will be the case that I will be suitable in the future if this gets worse.

Oh and your suggestion that I am young? Apparantly, according to the osteo's boss and the osteo, this is normal for a 34 year old! Yeah, because I can see lots of women my age like this

Sorry Pavlov, didn't mean to suggest you were anti surgery, I just don't understand why you've been told you're not a suitable candidate. I don't think you should accept the opinion of a GP or osteo on this, you need to get an orthopaedic surgeon to review a recent MRI.

I'm sorry you're feeling so down, I know how you feel. After the surgery it did take a few weeks for the nerve to settle down & initially I was quite fearful that I would relapse and never be free of this. At age 29 I was contemplating never being able to work again, it is scary stuff I know.

Regarding your activities I know it's hard but you must listen to your body, if you feel pain STOP. I ignored back pain for too long too. This might not be forever for you, please push for a referral or change GP & get surgery properly explored. Go private if you have to and have the means to do that.

It doesn't have to be this way - best of luck.

oh no i did not take it your suggesting I am anti surgery! I was just clarifying that I would like to explore all options, including surgery and why this is not the best option for me. the only answer I was given re not being a candidate, is that no nerve is being trapped permanently, at the time of MRI scan, and this is the only circs they would consider surgery. I agree I need to have it fully investigated by neurosurgeon or other specialist and explained/full alternative plan of action put in place, with me involved.

I have had a hell of an evening i did summer fair. It was mostly indoors on account of the weather. DS insisted on being carried, I can't take the pushchair out of the boot as it is a big brick of a pushchair, not a stroller (he does not go in it often so we never upgraded to stroller!). Not that a stroller would have been any good, would not be able to get it around/up and down steps. It was chaos, then on the way back to the car, while my sciatic pain was agony, DD ran back to me in tears as she had dropped her and DSs cake. CUe mucho tears by the two of them. So, i sent DD back in to buy two more, DS kicked off as he wanted to go into the scrum too, and I could not pick him up easily as I had bags/cardigans. By the time we walked back to the car for the final time I was almost in tears due to pain. DD said to me 'what is up mummy?! as I tried not to cry and I said 'its ok sweety my back is just a little sore' and she said 'oh mummy it looks like you are going to cry!' I was feeling v tearful 1) because it hurt 2) because I was aware that every step/wiggle by DS meant I was closer to my back screwing up majorly again and 3) i could not do a thing about it 4) I was not going to be able to this kind of thing on my own again and I was so upset.

And to top it off I missed my dose of gabapentin last night. Not able to take it this morning as it meant I would not function all day and I have to prepare for DDs birthday/DH had to go to work/school fair etc. I don't know if this why sciatic pain is worse today. It was flaring up a bit yesterday, but today I have had sporadic periods of numbness/pins and needles up both legs, all the way up. Hard to explain but maybe you know what I mean - small patches that shift quickly, like it is following the direction of pain.

However, a good thing happened. I spoke to a mum who I know vaguely at DDs school but really like. Her DD is in my DDs class and they get on well, her DD is absolutely lovely and she is coming to play with DD on her birthday with some other friends. Anyway, we caught properly for the first time to chat. She walks with crutches and has a clear disability - she has almost the exact same condition as I do, one tear, all the other lumbar discs bulging/dehydrating, and has the same osteo as me, struggled with the same barriers as me, been referred to the same CBT course (told me not to bother, they blamed her condition and the levels of pain on past negative experiences). Anyway, firstly it was really good to talk to someone else who understands, secondly, it was good to know that I am not the only one who has had it indicated it was my inability to cope that causes the pain, clearly not true as we have both had different experiences in life yet they are saying the same things to both of us, thirdly she recommended a private chiropractor who she said is amazing and fourthly she is a really really lovely woman, who manages her life fabulously despite this condition from which clearly she suffers significantly. Although I also feel down that she has not found that magic cure I am looking for

Hi sorry not been about much.

Firstly do not let them spin you the crap about 'not being a surgical candidate'. Please (metaphorically) hop up and down and get a second opinion. Or by the sounds of it first for you. You need to see a neurologist. The neurologist needs to see your MRI results. Not the GP or the osteo. The osteo is nice for the inbetween times while you wait for the consultant appointments. The neurologist can decide whether they should be going down injection and pilates route or surgery route.

Waiting too long and you will have permanent nerve damage and they say 'oops sorry, too late for surgery now, we will refer you to pain management'. You are 35 ffs, too young for this.

Please become a pain in your GP's side or change GP.

And re the crutches, I got one set from the hospital after an acute moment when I was admitted for a few days when my legs didnt work (no surgery, not a good candidate, too young), and the other I cant remember!

VivaleBeaver - you have my sympathies too. I have weird gynea / urology issues and have now been written off as a possible hysterical female. Its not nice, especially when the pain is still there and they look at you like you are complaining about a splinter.

look that is what I have said to the mum I was talking to about it. I am not prepared to give in as nothing needs doing other than tramadol yet. I am not going to do it. I just am not. DH keeps saying 'but what is it you want? they cant do anything, what do you want them to do?' He does not get it either. that I am not ready to see this as my lot now. that even if things move onwards and I feel better physically than I do now, I cannot beleive that it is ok for me to feel in constant pain, low level or acute without exploring as fully as possible all possible options. It may be that surgery is not the right option. It may be that I choose not to have surgery even if it were an option. But, to just say, this is it, have some drugs that are not compatible with your lifestyle or your job and have some CBT to get your head around it all, I am not ready.

So I will be metaphorically hopping up and down. Thank you, and everyone, for helping to validate my desire to not lay down and accept my fate just yet.

I am just not sure how on earth I am going to manage my job and this medication. I might have to stop the gabapentin as it is not good for functioning beyond the necessary. I need to stay focussed at work, and get there on time!

Oh, I really feel for you! This is so tough... Don't rule out the mindfulness for pain relief stuff though - it isn't anything like CBT (which I think is of incredibly limited value, having been 'prescribed' it for depression. Pththth) and although the mindfulness practice won't take away the pain xh says it offers a very physical way of living with the pain while you figure out what comes next...
How do you find the tramadol? That really messed with my xh's head and he just couldn't function. He ended up taking anything BUT tramadol... I really hope you can find a way forward. I can't begin to imagine how it is for you - only that I've watched xh (I still share a house with him) endure this and it's just horrible.

rookery I have not taken tramadol yet. But that is because I have said no, rather than because it has not been offered. I am taking codiene/paracetamol, diclofenac and gabapentin. I think I have built a tolerance for the cocodemol, but the gabapentin, not currently for sure. It just seems that the only direction I have left is tramadol. It seems to be given out like sweets, despite it being highly addictive, as the cure all for most physical chronic pain. If, if I go down the tramadol route, it will be when nothing else is working, as most people I know find it floors them completely. There is no way I will be able to work on tramadol, although GP was very 'lots of people are absolutely fine with it' yeah, most are not!

I have reduced my painkillers, apart from the gabapentin, as I need to get myself in a suitable state to get into work on monday. And pain free but high as a kite is not ideal It is ok, but as I said, tolerance to painkillers is higher than nerve blocker. I am just not sure I will be ok on it.

I will definitely try the mindfulness. I really do want to be in a better place, and definitely agree it is good to help find ways to cope with now, while waiting to make decisions for the next step (or waiting for other to make that decision!) and I am into meditation as a way to keep peace with myself, I just don't want to be thrusted into CBT as a cure all. It needs to be used alongside, not instead of that is my issue with it.

I am feeling better. I have chosen to substitute codiene with wine. It is not a good idea as I have lots to do to prepare for DDs birthday on sunday. But, I am next to useless this evening, as I am very aware that I have pushed myself a bit too far today, I am ok, but if I don't stop now I might not be.

I hope tonight is restorative and that the wine helps :)

I am sure it will be I am only having one large glass of red, as tomorrow late morning I am taking DD to a birthday party that happens to be right by my gym. So I am dropping her off and going to use the jacuzzi. I will do one length of the pool first, jacuzzi then to have a coffee with the adults at the party.

Then it is Armed Forces Day so I think there will be a parade or something going on so we will go and take a look at that and I will get the last bits for DDs birthday on sunday, so I can't be hungover

Tramadol is the work of the devil - it made me projectile vomit and turned me into a zombie. But at least if you don't like it you can flog it the nearest junkie.

Have you tried a TENS machine? I used one for a couple of months and it helped. It didnt' get rid of the pain, but the irritation of the constant buzzing took my mind off it.

Hope you're feeling a little better.

I went to the pain clinic a couple of weeks ago and casually asked for some tramadol for breakthrough pain. The pain doc was most definitely not going to give it to me. He is on a crusade to get it banned due to the addictiveness of it.

I would suggest asking the GP for some amytriptiline or nortriptilyne on a pain dose. That helps me so much esp to make sure that I get a good night's sleep which is so important.

You could also ask your GP for pregabalin instead of the gabapentin as the side effects from it are slightly different although works the same way. Some people who find that they can't function on gabapentin are fine on pregabalin.

btw there are loads of other options for pain than tramadol. There are things like lidocaine patches that are very expensive for the NHS but you put them directly on the painful area. I don't know whether your GP can prescribe these or whether you have to go to the pain clinic.

I've got morphine, tramadol fentanyl, And a couple of others, bit I don't find them effective.

The best one I use is Oxycodone, but again, reading info online it can become very addictive so I am worried about taking too much. Took it regularly today and by tonight was able to walk without my crutches. Sadly tomorrow will be back to walking frame/crutches

Oxycodone is fantastic. I had that after my haemothorax. I was in a bit of a different world to everyone else though!

It can be addictive but I know that in America people are prescribed it for the reason that it works. It had far fewer side effects than morphine for me.

Hey everyone.

I am going to see the gp tomorrow or wednesday. I should go today, but it is my first day back to work and I would prefer not to call up and say I will be sometime between 9:30am and 11am while I wait to be seen I will talk to the gp about different meds, as I have stopped the gabapentin completely, I just cannot function on it other than basics. It would probably be ok if I was not at work, but even then, it changes me to Not Me, if that makes sense. DH is having to look after me as I cant remember things, find things, cant always finish my sentences. I have been told by lots it takes a while to settle but I don't have 6 weeks to get it sorted.

I was a little blase as the sciatic pain was easing, still there, getting worse through the day or if I lift things but mostly managing until the afternoon. I realise now that a) it increases in the afternoons as I was taking my meds at night and it was wearing off b) the medsst were doing a lot! I stopped it on friday, and it has gradually creeped back and this morning I have a reasonable amount of pain in my right leg particularly.

I also am very very stiff in the morning when I get up, it takes a good hour before I can get straight, and whenever I sit down, or crouch down I am hunched for a while afterwards. I have a particular isolated pain in my back now too, like the pain has decided where it is, and as the day wheres on it is really painful to walk.

It has been over 3 weeks now. I hoped to be moving much more free of pain and without hunching. although I am further on that I was 3 weeks ago. At least I can stand straight if I try, it just hurts, where 2-3 weeks ago it was not actually possible!

I am nervous about work mainly due to worrying about the state of my caseload, rather than my back, I think I should be able to manage that ok as I am risk assessed at work, not at home! I think home would fail

I will definitely make sure I speak to the gp about referring me to the main pain clinic now, at the very least, so that I can talk properly about long term medication to suit how I live and I will talk about some of things you have mentioned. I think I am going to have to find a way to not take meds in the day time, only evenings, not sure how likely as I am going to have to take something this morning.

Thanks, as always for being here to support me everyone. It is good to know there are people who understand to talk to.