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Lumbar disc problems, constant pain. Where next?

(137 Posts)
PavlovtheCat Wed 06-Feb-13 21:23:30

Yes <sigh> it's me. For those are wondering who <me> is. It's a looooooong woeful tale of misery and pain brought about by degenerating L5/S1 vertebral disc.

So, medically this is where I am:

Had second spinal pathway (assessment point) appt with 'clinical senior physiotherapist' who works with the neurosurgeons. He agreed weakness of foot flexor on left leg, and some muscle weakness/atrophy in the calf, along with numbness and not being able to get anywhere near tippy toes on that foot, agreed that indeed things have probably got worse and that indications are the nerve is trapped/damaged (either or both) (yes, probably happened when I was told to do 'cobra' with force x 10, 4 times a day despite not being able to stand straight due to back not liking it - literally as soon as I was forced 'upright' the nerve pain shifted from right leg to left leg and BADLY). He also said he suspects I have an unstable spine, and that if disctectomy was not required, spinal fusion is very likely the best option now (different from Aug 2012)

MRI at the end of December. Results show 'indications of disc bulge that warrants discussion with neurosurgeon' and a letter was sent to say that this, along with evidence of planter flexor weakness, and some other jargon, the neurosurgeon has 'kindly' agreed to see me. YEY! I got this letter mid January, fabulous, not long now!

12-15wks wait. 4 months. To just have a chat with the guy. But, hey ho, at least I am on the waiting list now. And at least I am having a good run, with good positive thinking to push the pain to the back of my mind and I was walking straight so it seemed I was doing well, last 'episode' was over christmas, but recovered well. Yes, the odd few days where it 'goes' but I am learning to manage those episodes with carefully planned rest/medication/exercise contigency. Except, NO.

About two weeks ago it 'went' again. Really. Fucking. Badly. I should have gone to hospital due to level of pain, but in fact, I was at home on my own with two children one of which was poorly (another story). Goodness knows how I managed it. But I did. It took until sunday this week (10 days?) to stop the muscle spasms, which were going higher and higher. I was physically unable to stand straight, not just due to pain, but the back refused to go that way. Like before. So, I did the cobra exercises. Just 4 of them.

And now, the worst possible pain imaginable down through from my back (but not there particularly) down deep in my left buttock, hip, thigh, calf, right into my foot. It feels like something is going to snap. The pain when I take a step is agony, and although I can straighten, I can do that AND walk. My leg has to be bent outwards a bit when I walk and I can't put pressure on it.

And my back keeps 'buckling'. If I knock into something it gives way. If I twist wrong it gives way. I stood up from the chair yesterday without thinking, so did it normally, how I used to, not slowly, and as soon as I got to the almost standing position - BAMM! pain and collasped back into the chair as my back gave out.

I CANNOT live like this any more. The pain is unbearable and my meds are not touching it. It is now keeping me awake at night, I can't find any position with no pain. I have tried so hard. SO FUCKING HARD! to get on with life. How can I make it through like this until April or May? And then god knows how long before any surgery? My life is fucked. It is taking it's toll on every single aspect of my life - my relationship is at rock bottom, although luckily we love each other enough to recognise we need to make some changes, and that we want to and are talking about things now my work, well, I am hardly there, next to useless when I am. I will very likely lose my job at some point this year, certainly decrease my salary as I go onto half pay. Let's not talk about my children, they are rocks, but, even DD is feeling it now.

So. Apologies for the extraordinarily long rant to get to the point. But, where next medically? My GP has referred me to pain clinic (there is a waiting list of a month or so) I have no idea why they didn't do this before, I have asked, but heyho. And I have been given pregabalin. I have been given this before, but didnt take it as I am scared. I have tried amytriptiline and gabapentin and both turned me into a zombie-like person, I could not function. Although amytriptiline worked well in terms of nerve pain relief. GP gave me a lower dose and I took the first dose this evening. What else can I do?

If I go to the hospital, will they be able to give me steroid injection into my spine to numb it? God I so want to do that. Go to hospital, have some fucking powerful drugs and be left to sleep for a few days with no pain. Then I can get up and get on with it again.

How the Heck do I get through the next few months when I can barely get myself up and dressed in the morning, let alone have any life? Any techniques for coping (don't say counselling...).

The prospect of 8mths plus before surgery and then 3 months recovery. I am not going to be anywhere near normality for another YEAR! presuming of course surgery is suitable.

Sorry. I am sure you are not going to get this far. But if you do, fucking well done you!

Erebus Wed 06-Feb-13 21:53:16

God, how horrible for you. Low back pain is an absolute bastard.

Is there any point t all in going back to your GP and demanding an emergency appointment with the neuro people? Lay it on real thick- god, you'd not by lying, would you? Take DH along to be 'firm'?

And people do front up in A&E all the time with LBP, especially when it is life-alteringly excruciating- maybe a 'way in'?

Sorry I can't offer real help, only my real, heartfelt sympathy. It's no way to live at all.

IndigoBarbie Wed 06-Feb-13 22:09:09

Pav, so sorry this is short. Please please google 'structural integration' it's a Rolfing technique. I'll be back with a proper answer soon. It's a really heavy duty bodywork but allows your body it's own internal space, balancing out muscles, tendons and fascia. I had serious weaknesses and numbness spd/ sciatica and pubic bone problems and this stuff helped me big time. Anything is worth a shot xxxx sending healing vibes for you xx

PavlovtheCat Wed 06-Feb-13 22:48:22

indigo I think you mentioned rolfing before, I am sure I looked at it, have no idea why I didn't act on it. I will go take a look in a second, thank you so much for that.

erebus my gp knows. I saw him on friday, with a crutch, which I have tried to avoid. He told me he knows. He told me I have been the most 'conscientious' back pain sufferer he knows and that it is now time to have surgery. He said he is absolutely sure it is the disc and not for example facet joint (suggested by physio as a vague possibility) and he said I need to press with the neurosurgeon, as he will try to talk me out of it, and rightly so for many people (his words) but he said this has to be done now. He told me he could see I was not living a normal life. He also said they are hugely over demanded at the neurosurgery team atm.

A mum at school run, her husband is a doctor, not sure what he does, but suspect surgery of some kind, I say hi but not much else as he is not often there but his mum and I get on, kids have had play time at each others houses - he asked my DH how I was, and if we knew what was wrong with my back as it looked to him like it was disc related due to how I was walking. He then said there were only two surgeons available hence the long wait.

PavlovtheCat Wed 06-Feb-13 22:50:32

Oh I have not read fully but seen it is a Bowen technique. I have been looking for a Bowen therapist in my area actually, as I am hearing a lot of good stuff about it. Typically, another school mum is training in it, almost qualified, moved to Germany. How dare she!

Pavlov, I know that I have always been pro surgery right from the start of your pain but I really think that it needs to be done ASAP if you are getting numbness. I don't know if you remember but I got a private MRI done and took myself to A&E. I was operated on that night.
Are you keeping an eye out for signs of cauda equina?

Go to A&E - really.

PavlovtheCat Wed 06-Feb-13 23:10:41

tough I had numbness since Aug, proper numbness, I got DH to stab my calf with a knife (not hard, like actual stab, just a prod!) couldnt feel it, I have two numb toes permanently, and numb patches on the side of my foot and calf, sometimes it is worse than others. The spinal pathway clinical guy knows this. My GP knows this. and the female, she told me 'some people just accept numbness rather than go through surgery which might not work'.

I am telling people how I am, my symptoms, they are checking, agreeing, and doing nothing.

I have talked with DH about going private, but the consultant fee is £300 and we just can't do that right now, with a falling down wall in our kitchen which is going to cost an arm (or maybe my left leg!). But, we are working on it.

I almost went to A&E today, as it was not that the pain was worse, it's just there is no let up. I can't lay flat, as if I do my whole leg goes pins/needles and numb at the same time. I am worried they will just laugh at me for being a timewaster and chuck me out in tears

Checking for CAS regularly, no symptoms.

PavlovtheCat Wed 06-Feb-13 23:10:57

CES, sorry.

PavlovtheCat Wed 06-Feb-13 23:13:17

tough isnt' it funny (or maybe not funny haha) that, right at the beginning of this last year, you and other posters who have had experiences of disc problems said this is what was needed, you pretty much diagnosed me and it has taken the medical route over a year now to get me to the place you said I should be and to actually agree it needs doing.

PavlovtheCat Wed 06-Feb-13 23:15:13

tough with my MRI results, if I go to A&E will they have access to them? If I am on the consultant waiting list, will he come to see me if I am admitted?

I don't even know what the report says, I have not seen it, just a note form letter informing my GP that I have been referred to neurosurgeon for further discussion and a little of what the MRI hinted at.

Yes sad not that it makes it any better.
I still would try A&E though, my biggest symptom was loss of reflex in my foot and numbness. I am puzzled at the response to you as I didn't have any other symptoms. I was mucked around for a year though too.

timidviper Wed 06-Feb-13 23:19:30

Pavlov I'm so sorry this is so bad for you. Just wanted to say take any drugs they will give you, you may feel like a zombie at first but that does pass, the sedative effects usually wear off after a short while. Good luck

Sorry, X posts. When I took myself to A&E, they managed to get hold of the MRI from the private hospital. This was 10pm at night, so must be doable.
Then they sent me up to London by ambulance, I think there is a pool of available emergency beds. I was sent to London Neuro hospital.
They didn't have access to any other records, it was all done by symptoms and MRI.

PavlovtheCat Wed 06-Feb-13 23:29:19

Is the foot reflex the planter reflex? Apparantly there is weakness. I can move my foot ok, it just hurts. The numbness is not all over the foot, just in smatterings. It's just the pain I can't cope with. If it was numb all over I could probably bear it!

It's like they are going 'no nerve entrapment, no nerve entrapment, possible nerve entrapment, but try this, oh, ok, now there appears to be nerve damage, going to need surgery, got to wait a year for it.'

It's not like they have not been aware. I saw the normal physio in Aug who was so worried about my symptoms she called in her boss who sped me into spinal pathway team for urgent assessment, and then it has gone dead in the water - he gave me intense physio exercises, because 'no surgery is going to work if you are not standing straight, that in itself will disable you'. He said it was going to bloody hurt, but do it - that was the Cobra exercise where you do a push up basically while keeping your legs and hips/stomach on the floor, arching your spine backwards (in case you don't know). Yes, a wonderful back strengthening technique, but NOT in acute phase! He knew it was going to be a problem as he said to come back in two months (which was actually 4 months).

I wonder if I could call him and tell him it has got worse quickly? He is the spinal assessment team after all, maybe he can see me again?

PavlovtheCat Wed 06-Feb-13 23:32:13

timid but I can't function on them. I have two young children and a DH who works very random shifts often starting as the school run home starts. And job.

I have an arm of drugs here, but I just can't take them all. DH is working at 9am tomorrow so I have to be able to get up, drop him off at work before school run, then have toddler with me.

What works the best is diazepam. I have a bucket of the stuff. it's not doeable with the children. The only way I can do it is if DH takes a week off work. I don't think he has the leave to do so.

Yes, plantar reflex. This makes me so sad and cross, just like I was , putting up with it, dutifully doing the physio and struggling on with pain and looking after children.
My physio was concerned too and referred me back but nothing was done.
You could try your consultant again , worth a go I suppose. I am just wondering if A&E might be a quicker route.

PavlovtheCat Wed 06-Feb-13 23:35:41

I took amytriptiline for 5 weeks and side effects were so bad GP told me to stop driving and notify my insurance company! shock that's 5 wks I can't do that long again.

But, regardless of whether I can or not, I have to try the pregabalin.

I bought a pill wallet today, and have put all the pills in the sections for the next 7 days (it has 4 sections per day) and bloody hell I am taking a lot and that is without the additional painkillers and diazepam! It's a great wallet though, has a little card with dose/frequency to fill out, and you can take out one day's section if you are out and about. It's in a leather effect wallet to store it without it looking hugely like a pill holder.

grin I have an attractive card one that the pharmacist delivers. I feel about 90.

PavlovtheCat Wed 06-Feb-13 23:37:55

so, yes then, confirmed plantar reflex weakness in left foot and something else relating to what I believe to be numbness, but using fancy words.

I think A&E will be quicker too. I simply cannot go on like this any more. It has got worse and worse and worse and the good days are less and less.

PavlovtheCat Wed 06-Feb-13 23:40:13

sad isn't it? I was looking at some pretty pill holders, so that I can be all glam as I pop my pills at work, with my swarzky (sp) crystal and silver pot.

And I am going to a wedding in March, and discussed with DH today that I should accessorise the dress by getting a nice stick or some new crutches as grey won't go grin oh dear.

How are you doing after your surgery, how long ago was it now? and are you in a better place pain wise because of it?

My surgery was 2011 , I had three lots within two months. The pain relief was amazing but I have some scar tissue which causes pain now. I think that is one of the biggest drawbacks of surgery.
I have permanent drop foot which is attractive but it could have been much worse. I have to say that I am quite bitter about the way that my old GP treated me and I did write to him afterwards to let him know what happened.
I was due to go back to work and had to give it up as a result of the back pain. I really hope that you get somewhere soon with yours, it's so miserable and I think that you have been so patient.

DontEvenThinkAboutIt Thu 07-Feb-13 00:11:07

No advice but just wanted to say you have my sympathy. What a bloody pain, literally. Hope someone gives you some useful info.

thanks wine. Etc

PavlovtheCat Thu 07-Feb-13 00:14:10

tough my gp said he 'admired' how I have held myself and managed, 'conscientious' he called me, that means I have not kicked up enough of a stink I suspect. I see both GPs, they are both supportive now, but only as they have seen the rapid deterioration of my physical health and now probably my emotional health is not so great due to it, but to start with they were very much of a mind to just drug me up and send me on my way. It's all a bit too late and they are not pushy enough for me.

PavlovtheCat Thu 07-Feb-13 00:15:46

thank you dont, bloody hell I would love a glass of wine. Or, rather, I would love to want a glass of wine. I don't even like it any more. and THAT is bad. I used to love a glass of wine after the kids settled to sleep. Now, as well as it being not great on my cocktail of drugs, I just don't want it. and that makes me quite sad.!

You are probably depressed as hell, anyone would be. Hope you get some sleep, if not, go and cry in A&E or up your game to GP.

PavlovtheCat Thu 07-Feb-13 08:57:14

Didn't sleep much between pain and DS who was up and refused to settle for DH, only me (then instantly) several times. And I fell asleep in a toddler bed, now that is NOT good for back problems I can say.

It's a very raw, hard, aggressive pain. I haven't got up yet. I can't face it. It hurts like hell and I have not even got out of bed yet. I have spent some time focussing on the pain to try and locate it. As I had thought last time and again this time, maybe it's my hip not my back. But, no I really think it is the nerve. If I press where the foramal opening it on the sacrum, it really hurts, if I press where there is a little pain around the base of my spine and near my backside it hurts and it makes me foot numb. Now, that bit is concerning me - it is not numb there but there is altered sensation and also some coming and going tingling around my genitals. That will go when I get up though, I have had that before, it comes and goes, and again the medical professionals know that. I have told them. Pee'ing and poo'ing fine. well, less fine as I have taken codeine wink but nothing more sinister than that grin.

I was meant to get up with the children as DH worked late shift and starts today at 10am. I thought it was 9am, thank goodness it wasn't. I said last night when he got home I would give him some time this morning, as he is knackered too, but bloody hell, to start with I couldn't lift my head off the pillow (new meds I expect) and then when I was ready, the agony was too much. So, taken meds without brekky, so that I can actually get up and take Dh to work.

Then, I am going to have coffee with a lovely friend who is in early stages of a very wanted and long time coming pg to talk about babies and she will help with DS I am sure. I will see how the morning goes and if I get to lunch time with no let-up I will ask DH to come home and take me to A&E. I will prepare him for it before work so he can let his employers know when he gets to work. They are aware of my back problem as he has had to take last minute time off work before, but to say they are less than sympathetic is an understatement, although individual members are.

PavlovtheCat Thu 07-Feb-13 09:00:53

tough and yes, I am starting to acknowledge, slowly, that I am depressed. Now, that is tough. I have never suffered from depression. Stress, yes, I can be highly strung if under pressure, but not depressed. It has taken some time, but I can now start to see it for myself, but still struggle to know how much of this fog and upset is pain and how much is depression as it's all mixed up with each other. But, I don't want more drugs to manage that anyway. I am taking enough. I had a conversation with my boss couple of days ago, and even she suggested I get bloody counselling! wink

How are you Pavlov? Did you have any success with referral today?

My back wasn't as bad but pretty close. I had a burst lumbar disc and was crippled for a while. In between the drugs and a TENS machine life was just about manageable. Anyway, what I did say to the medics was that I could do the operation at short notice, that way if they had a cancellation they could call me in. It might be worth saying you can do this - there are often cancelled operations due to the patients being too fat or having contraindications which mean they can't go ahead.

Also ask for specialist pain referral whilst your waiting.

PavlovtheCat Thu 07-Feb-13 16:37:13

I am doing ok tough. Pain has been bearable today, with the help of additional painkillers and a good friend to moan to. We walked around a department store with me stopping to sit in the random chairs placed, just for me it seems. I am dragging my foot, but, that is because it hurts to pick it up rather than because I can't pick it up. I try to make a point of picking my leg and walking 'normally' as the pain has eased with walking a little, but when I do that, my foot goes numb, so I have to shift slightly to the side to bring back the sensation. I am walking very slowly and shuffling with leg straight but insisted on walking as I have not done much for couple of weeks, needed to get out and moving. It felt good to look at dresses and bedding and spray perfume on and get free face product samples, drink coffee and chat, even though it hurt like hell to do it. Luckily, DS was an absolute angel and behaved himself. My friend helped a lot through it though, and he loves her to bits so often wanted to hold her hand down escalators etc.

DH is not working this evening. Thursday is normally the evening we try to do something for us when not working, but, I suspect, as happens often these last months, that will go out of the window and I will take more painkillers instead, but part of me says, no, I won't I will stay alert and we can watch a movie, but I really can't see that happening. Poor guy, it's really shit for him too.

So I didn't contact GP as I wanted to try and ignore it all for a bit, and also as I know what he will say. Spinal Pathway team - I am going to call them tomorrow for some advice/see if they can see me again.

PavlovtheCat Thu 07-Feb-13 16:38:21

world thanks for that, worth me calling them tomorrow and letting them know. I am waiting for appt to pain management clinic, done a couple of weeks ago, but so far nothing has happened, it's apparantly a month or so wait and my GPs are slow sending letters as it is.

PavlovtheCat Thu 07-Feb-13 16:40:26

I haven't got a tens machine. I have been told about them lots and keep forgetting. I will borrow (loan) one from Boots and see if it works, then i it does, if it works, I will buy one.

BramblyHedge Thu 07-Feb-13 16:41:26

Quick reply sorry. I had microdiscetomy in April and was bumped up list due to having 3 small children to care for. I had a private consultation £250 and was then put on NHS urgent list. Is this an option for you to speed things up. My op was a success if that helps.

Pavlov, I have skipped to the end here.GO TO A&E now tonight.yes I am shouting at you because I'm scared you are going to end up paralysed.stop making excuses and go. I have followed this from the beginning you have done all you can, you really really have.It's time to call in the heavies.

and cobrasangry angry angry angry what possessed you to do them again? personally I think you have a case to sue that physio.he proposed a highly aggressive treatment based on a shoddy evidence base that has made you worse.I am sosad angry on your behalf and honestly really worried about you.

worried now I will have upset you,sad it's just so stark reading it all laid out like that..

FoofFighter Thu 07-Feb-13 17:19:05

pavlov, we've talked before in the past, I have the same thing. Had suffered with it for almost a year before surgery came up (which then didn't go ahead for reasons not going to go into) A year later and still suffering although more off than on thankfully for most of the last year, it's coming back with a vengeance now I am pg though.

Anyway I wanted to say that my aunt also had the same thing happen, presented at A&E within a few days of symptoms FIRST STARTING and had the op within the next few days hmm

Go to A&E, there's really not much else you can do other than get your GP to put pressure on neuro. It might work, it might not.
And double check that you really don't have ANY of the cauda equina symptoms starting up...

Good luck to you x

PavlovtheCat Fri 08-Feb-13 10:58:58

denial my lovely you have not upset me. You are right. I need to do something A&E or something but I am scared of a) not being listened to, being made to feel stupid and sent away with no change and conversely (my main fear) b) being told I need op right there and then.

Why did I do the cobra exercises? because, I was so so hunched over, and I could not stand straight and had been like it for too long, as such all my muscles up to the top of my back were starting to spasm, and I had the physio words in my head 'if you don't get yourself straight asap you will end up permanently disabled, you have to get through the pain and do it' 'if you don't get straight, then no surgery is going to work' because despite my instincts telling me it did not feel the right thing to do, I also had the fact that as DH reminds me when I try to take matters into my own hands 'they are the trained ones, qualified, of course they know what they are doing', because I was fucking stupid.

OK, I am waiting for spinal pathway team to call me back for a chat and see what they think/if they can speed things up. Pain has reduced somewhat today, although oddly had started a little in the other leg (hip), but prob as I am compensating in my walking. Night time is the worst as lying on left side is excruciating, but I took 100mg tramadol (MR), 30mg codiene, 4mg diazepam and 25mg pregabalin before bed. So, I should bloody hope to see a difference grin. I have sensation back in my foot for the most part and just bad pins and needles rather than numbness.

I am pretty sure I don't have CES symptoms, not 100%, but peeing and using bowels fine.

PavlovtheCat Fri 08-Feb-13 11:58:27

ok, spoke to lumbar spinal physio. He said my best bet is to call neurosurgery team and ask to go on a cancellation list, as world suggested. He said the waiting list was made up of lots of people just like me, not able to work, caring for young children and he would need to make a good case for trying to 'expedite' my referral. I explained my symptoms and he told me to see the GP and discuss my pain relief, and I told him that a) I have done that and on the maximum level of drugs that I could possibly get from the GP and that b) yes it would be lovely to take tramadol plus 60mg codiene and 5mg diazepam 3 x a day plus pregabalin, but it is not realistic with two young children, and a husband who works shifts so cannot always be there to care for the children. I told that him that also it would not stop it all hurting, it would just make me care much less and not be able to participate in my family life.

He asked me to do one of the tests where I held on to his hands and stood lift up on my toes at last referral. I can't do that. He said that he would therefore email the neurosurgery team for me and would ask that they expedite the referral, as my original referrer, but that there were no guarantees. He suggested that I call them on Monday and ask if they have been able to take me up the list, and if not ask for cancellations as discussed.

Why does it take being upset, cross and crying to get someone to bloody listen and do something angry sad

So, I now feel for sure that if I go to A&E they will not do anything. He made me feel like I was being dramatic or, no that's not the word, thinking that I have it worse than everyone else and I should just get on with it like everyone else on the waiting list is doing.

He was not rude, or unpleasant, he just seemed to be fobbing me off having heard it all a hundred times already. Probably has.

But, yeah he has probably seen much worse than this, of course he would have in his job, but that does not make my experience any less valid or real.

I also said I understood there are people on the list not working because of their condition, but that I still have my job and if this continues with no real treatment I will lose it, because this has happened to other people it does not make it ok to let it happen to me too. He seemed to be saying that because I am still working, it means I am less of a priority than those who can't work. He does not get that the only reason I still have a job is because a)i work for a government based organisation who have to follow Equality Act to the letter before they can fire me and am a TU member and b) I have a very understanding and supportive boss who is bending over backwards to accommodate me and c) i know what my rights are/rather that I have rights - many people lose their jobs because they don't have those things (sorry, rant there).

I am so fucking cross. But, least it has taken my mind of the pain grin

MissEleanorLavish Fri 08-Feb-13 12:51:36

Pavlov, I've lurked on your threads so know your story but now if your legs going when you stand up, being unable to stand on tip toes etc, having to drag your foot etc, it sounds like things are getting much worse. Ignoring what you think might happen at A&E, and listening to your body - do you feel like it can wait or do you need to be seen now? If the latter, get yourself down there - don't worry about wasting their time, people go for far far less.

PavlovtheCat Fri 08-Feb-13 13:28:10

Hi, thanks for lurking grin It feels like each time it 'goes' it gets much much worse, for much much longer, then very very slowly the pain eases. And although I am in a lot of pain, it feels like it does feel like it is easing now, after two weeks. Slowly. I am not dragging my foot due to inability to pick it up, but because it hurts my hip/buttocks/leg right to the foot to pick it up and increases electric shock pins and needles.

I feel much better than I did yesterday. Or the day before. And, despite some coming and going numbness, less pain than before.

PavlovtheCat Fri 08-Feb-13 13:29:14

and I think it is my back that goes, my legs give way yes, but it seems to be like a huge thunderbolt of pain through my back that instantly causes my legs to give way when I stand, if that makes sense.

FoofFighter Fri 08-Feb-13 13:47:25

Total sense yes.

PavlovtheCat Fri 08-Feb-13 14:37:23

miss I have been thinking about your question, putting aside what A&E might think etc, do I think this can wait?

So. My answer is not straightforward. I am not sure I can do straightforward. No, I don't think it can wait. I think it needs to be dealt with now, as if it isn't, at the rate the pain is increasing each time, there is a risk next time it won't recover and damage will be done permanently. It needs to be done now so that I stand a chance of my life not being irreversibly fucked up, not just the physical consequences of a trapped nerve, but the lifestyle damage - loss of job, loss of relationship, it is all being threatened right now. But. This has been the case for months.

So, I guess, really the answer is Yes. It can wait. Because it has waited this long. Because although these last two months has been absolute torture in terms of pain management, and this last week or more in terms of leg pain has been the worst it has ever been, it will recover to some sense of normality (4/10 pain let's say) and the symptoms that make me (and everyone else) go shock will subside enough that fear has also subsided. It is starting to do that now, but it WILL go again, and I know it will be as bad next time. Although maybe not if I avoid Cobra Exercises this time wink. I will be left with residue numbness in my foot/toes and a smattering of numb patches that come and go, along with pins/needles in my foot, and elsewhere. These symptoms, they have been present since Aug last year, so A&E will not see them as urgent.

But. DH and I have spoken, not 10 mins ago. If this happens again, I will go to A&E regardless of work commitments (his or mine) or any other factor that might put me off.

And I am going to try to get the money together to see the consultant privately and let him know how fucking crap my life is right now so he can consider actually fixing me.

MissEleanorLavish Fri 08-Feb-13 15:39:27

All makes sense and I don't think any answers with chronic pain are straightforward but glad to hear at least it's easing right now. And that you have a plan for next time. And yes, a consultant needs to hear how crap it really is - as you say your whole life is being affected.

MissEleanorLavish Fri 08-Feb-13 15:54:34

But speaking as someone who had suspected CES - please do go to A&E if you feel anything changes - it's not worth mucking around with.

LostInWales Fri 08-Feb-13 16:12:36

Oh Pavlov <gentle squeeze> fucking backs. Follow up the pain clinic refferal, I can't understand how you haven't been referred for some nerve block injections, they can make such a difference, not a cure but certainly keep you going until you have your neuro appointment. Keep taking the drugs wink.

I have just discovered the joy of an electric blanket, rather fantastic the other weekend when I discovered exactly why stopping tramadol is a very bad idea!

PavlovtheCat Fri 08-Feb-13 19:42:53

lostie oh are you still suffering too? I have a fab heat wrap which is almost always on. I have finally been sent to pain clinic where they can do injections. I had one epidural injection about a yr ago don't work but Apparantly the pain clinic can do more direct injections. I don't know why I didn't get referral earlier, been asking. It seems to take stomping,crying and being a pain at the doc surgery to get any referrals. Now, they are doing much more but, so much has been left so long.

I have taken lots of meds, watching cooking prog, trying to ignore the fuzzing in my leg. I sometimes get thi odd flu like pain, like an unwell feeling in my spine just before it really 'goes' and I have this now, I have drawn my own views of this, think it toxins from the disc tear which means it has leaked. Of course that is probably a pile of horse shit but it makes sense to me. Also means pain in back will increase again by tomorrow sad

you know I think you should copy and paste your descriptions on here and send a letter to gp, physio, consultant asking them to assure you that your condition won't deteriorate while waiting oh and add in your mp! I am sosad for you, this is horrendous that anyone should have to suffer this much.

Say as predicted it is worse tomorrow. You go to a&e and you see a Neuro consultant. They say Pavlov this has to be done now because if we don't scary x,y and x will happen.Would you do the surgery?I think you would because you would have been sort of given permission to do it.

The physio giving you the "there are worse than you on the waiting list" guff is using emotional blackmail to make you shut up and go away.Nobody has even examined you today.How can they know what subtle changes to your condition have occurred over the phoneangry grrr I'm really pissed off about this can you tell? wink wink

Or my next scenario, if your dp woke up tomorrow / or had an accident tomorrow and ended up in the state that you are in what would you advise him to do?

thanks brew wine

choose as neededwink

LostInWales Fri 08-Feb-13 21:14:32

<waves some thanks along with denial>

I think the operation is a big thing but my Bil had it a few years ago and is back to jumping out of aeorplanes and skiing. You have to take the recovery VERY seriously though, something you would have to think about with your brood. There is no point doing it if you ruin it by going too fast afterwards. DH has had the injection (moderate bulging disc but straight onto the nerve root. Just call us the shit back family wink) and he has found it miraculous. The first one he had I cried when he got up for the first time as he went from limping and bent like an old man to walking straight in a matter of minutes, so brilliant if it works for you. He has a consultant neurosurgeon do it under x-ray control.

My back sadly is non-mendable as I've got degenerative arthritis of all the tiny joints where the vertebra articulate coupled with extra bone bridging some of the gaps. I have to thank you again though because the tramadol has made a huge difference to the mid portion which has been horrible for a decade. I am hopefully going to have the big injections to my SI joints soon which will hopefully get rid of my sciatica like symptoms and then with the tramadol only needing to sort my thoracic spine I will be dancing a jig wink.

PavlovtheCat Fri 08-Feb-13 22:30:01

lost are those joints the facet joints? Sponsl guy mentioned possibilitynofnfacet joint being the cause of probs, but, not any real conviction. So sorry to hear it is not going to get better, and yey! For tramadol helping. Are you taking the modified release or managing ok with normal release? It's good to hear about the injection working, this is really what I want to try before surgery. I had wondered if I went to A&e they would do it for me there but it seems if neurosurgeon does it maybe not. But, that would be fantastic if it worked. I agree about seriousness of surgery recoery and children and yes I have to admit that really worries me as ds is so very clingy, he won't leave me alone, and I am having to be really ruthless now in order to break that, or else it wont be possible until he is older. He is only 3 and as much as he loves daddy, there are times that only mummy will do. But we are working on that, starting with night time as I have said now my pain is quite severe at night I am no longer getting up to see to him. End of.

denial great idea about the letter. I am going to do that. Thank you! Re if this happened to Dh, I would have taken him to A&e long before now, if I'm honest. There is no way I would consider this normal and ok.

BUT, with me, I think, it has got this far slowly, building up worse and worse and I have got so used to some level of pain I just don't know how much more serious it is. But, I know, if I had no pain. If I were just as I used to be, and I woke up to this, imwould go to the hospital, I would feel worried. But, as I said, it's been incremental day by day, each episode is worse than the last, so not gone from 0/10-8or9/10 but gone up slowly and as it reduces back down I settle for 4-5/10 as normal. In fact I don't even know if I cannot a figure on it as its just there all the time so i minimise it. I remember I told osteo pain was around 2-3/10 so he didn't do MRI, I had epidural injection, which although didn't work, it gave me releif for about two weeks and then I realised my pain was more like 4/10, so this is worse. Right now, pain levels are 7/10 I would say. I think it is natural to minimise our pain levels and symptoms.

Would I have the op right now? Discectomy, hell yes. Get this blasted disc out, the offending bit, and see how it goes. I am worried that if it is not dealt with right now I will end up with nerve damage that won't repair. Worried that this pain will never end. But not spinal fusion, I have too many questions to ask first, like, why can't they take my healthy disc cells and transplant them into my sick disc so it regenerates? Or why is fusion better than full disc replacement, and will they do hip graft or donor graft, will I have the newest possible techniques available or spathe older style fusion?

Most of all, I just want this pain to end. I just want a break from it.

PavlovtheCat Fri 08-Feb-13 22:35:58

If I go to A&e tomorrow would I even see a neuro consultant? Because, if there was a chance I would, I would be there. Do they even work weekends? If there was any chance of getting a direct injection to help, I would do that.

Tomorrow is another day.

You guys all rock, thanks [hippy] brew

LostInWales Fri 08-Feb-13 23:10:07

I really don't know what would happen if you went tomorrow. I think a lot would depend on what sort of hospital you have locally, if it's unbearable it's unbearable though. There can't be much you can have prescribed differently but if you could make a case for CES then they would really have to try and scan you ( depending on MRI cover over the weekend). When DH has had the injections it's been as an inpatient day case, so admitted to a ward etc, not sure if they have that set up at weekends. Can't harm your notes or place in the queue though if the pain is so unbearable you had to go to A&E.

You are so right about getting used to always being in pain and finding it hard to score because of that. My physio ( who I saw privately) was a bit thrown when I said a 3 was a really good day, I can't ever remember having a pain free day. Last weekend was a 7-8 but that was my own fault because I got a bit pissed instead of having tramadol. I learnt that lesson really well wink. People in general have no fucking clue what it's like to have constant pain though eh?

You're right btw, I have progressive degenerative arthritis of my facet joints, stings like buggery let me tell youwink. Probably moving on to a patch because the slow release tramadol oral stuff doesn't last long enough. I'm just angling for a little hip flask of morphine really wink.

Hope tomorrow is a better day than you are expecting. I'll be here if you want to chat. (Ds1 is 13 tomorrow shock and he has decided he wants to slob around doing nothing, fine by me grin)

In amongst all the gloom, can I just say that once I had the disectomy my life improved beyond recognition. I still (several years later) get a huge joy in being able to wiggle my hips and other than a bit of stiffness, my back is now "normal". I hope once you get your operation that you have a similar recovery.

MissEleanorLavish Sat 09-Feb-13 09:08:43

I'm a few weeks post op (discectomy) and it's been hard (my kids are little too) but no harder than managing with a bad back (easier in a way, nobody expects me to manage and we all knew it would be 4-6 weeks before I was getting back to normal (whatever that is!). I've tried the steroid injections too (both to reduce nerve swelling and in the facet joint) and they helped until I knackered it again.

world it's good to hear several years later you still feel good. I'm so pleased at how I feel now compared to before that I'm terrified it will go again in the future - did you do anything particular to help your back recover?

Follyfoot Sat 09-Feb-13 09:23:05

You poor poor thing Pavlov. I had a prolapsed disc in my neck and the wait for surgery was desperate so understand completely how you must be feeling. Re A & E, perhaps you should go today? Not sure what the size of the Neurosurgery unit is, but where I worked we would have had a junior and a middle grade on duty for NS during the day at weekends, plus a consultant on call, so there is likely to be someone about.

Your situation reminds me of a friend who was in a similar state. Eventually he fell out of bed one day and couldnt get up. He was taken by ambulance to our hospital and had surgery the next day. Unfortunately his symptoms had carried on for so long that he was left with a limp sad .

If you dont feel you can go to A & E, you could contact the Consultant's secretary and explain how things are. He/she might be able to get you seen a bit more quickly, or point you in the direction of who controls the out patient clinics to do so. Or go back to the GP again and push for them to get the appointment more urgently.

PavlovtheCat Sat 09-Feb-13 09:50:40

eleanor wow you are post op! well done for getting through it with little ones, I really really hope it works for you and it doesn't re-occur. Was it CES that resulted in the op or was it a longer term planned op?Sorry, you have probably told me this before but my head is in a cloud of pain and medication wink I have heard so many good things. My own GP has told me that he thinks I need the spinal fusion now. He has swung quite dramatically from this time last year saying rarely would he ever say fusion as it is such a huge surgical procedure and does not always work to saying, last week when I hobbled in with so much pain on my face that even the 80yr old lady on sticks got up to open the door when it was my turn to see the GP, that he thinks they should do discectomy and fusion together. I am not entirely sure what makes him qualified, but despite his 'so laid back almost asleep' approach to care, he actually seems to know what he is talking about and had explained my first MRI to me when no-one else had. So, that worries me. I want more explored first, but it is taking so long that so much more damage is being done while waiting there might not be any other choice.

I am reading (again) a great book by Sarah Key 'Back Sufferers Bible' and it shows the stages of degradation and she says that pretty much all lumbar back pain stems, initially at least from a vertebral disc, even facet joint arthropathy, she attributes to being as a result of damaged disc placing pressure on those joints. She clearly believes that muscles spasms speed up the degeneration of a disc, as they can continue long after whatever triggered it. So, if spasms are not under control the disc will basically die completely. If this happens, there is very little that can be done apart from a) stem cell implantation (yeah like they will do that) or fusion.

She also has some great techniques for acute/sub acute/chronic phases of pain, but I can't ever seem to get past sub acute phase and her ideas are not always compatible with small children/jobs etc.

how is it today Pavlov?

PavlovtheCat Sat 09-Feb-13 10:00:53

Anyway, I feel much much better today. Emotionally able to cope with it all as much as anything I guess. I am almost moving normally although there is pain, it has subsided enormously. i have a numb back of my calf and numbness along the outer edge of my foot into my last two toes, but have had that before. I have a little numbness/prickling on my left inner thigh which comes and goes, I will keep an eye on it. <sigh> I just breathe a sigh that today, my pain levels have dropped for now.

So, at the moment, no hospital. A&E and the weekend is not going to be a great place to be, so I will just crack on at home. I can at least function now, where earlier in the week, and over the last couple of weeks I have not even been able to function as part of this family unit. I got up with the children this morning and did breakfast, while DH has a lie-in, and can sit relatively comfortably, numbness is there yes, but so much less pain.

I think the shit ton of codiene and diazepam that I took last night helped somewhat grin. lostie I have cut down on the tramadol as it keeps me awake. That's the biggest drawback to it, it really makes me wires and the night time dose just means I am awake for hours. And, with the pain worse at night, not sleeping means I focus on it which is not good. So, I have tapered it and take 100mg MR in the daytime and top up with codeine. For some reason, it is much better at acute pain relief than tramadol for me, don't know why as tramadol converts into something like 3mg morphine per 50mg compared to 1mg morphine per 30mg codiene, so tramadol should work better confused.

Thank you all SO SO SO MUCH for helping me, once again, through another shitty bout of pain and worry, my familiar friends are always here with your support and hand holding, and I honestly don't think that mentally I would be here coping this far through this shit time without your continued support and wealth of knowledge. thanks

PavlovtheCat Sat 09-Feb-13 10:04:08

and I promise, if/when this happens again, I will be at A&E like a shot. As mentioned, it certainly won't hurt to have it recorded how much pain I am in during my acute attacks. I will not struggle on alone again waiting for the primary care route to do it's stuff as they are not working with me enough. I am just another patient same as all the others so why would I get preferential treatment? I get that, just doesn't help when I am more than a patient to me and my family.

I know what you mean but at some point you are going to have to be "selfish" and push.This is the mess our healthcare system is descending intosad .On a brighter note, I'm really glad you feel better today.Have a lovely day.There's a lot to be said for "one day at a time"grin

LostInWales Sat 09-Feb-13 11:10:54

So glad you are feeling 'better' today, I have been thinking about you all morning!

Madsometimes Sat 09-Feb-13 17:01:13

Very glad things are looking up today. I also think that A&E on a weekend or an evening/night is not going to be the best course of action (unless you absolutely cannot move even with pain killers). There will be some consultant cover for neurology, but unlikely to be the specialist that you need. You could wait for four plus hours, and end up with a junior doctor doing a pain killing injection in your back (who may or may not be competent) and then sending you home with instructions to see your GP. Apologies if I have offended junior doctors, but Pavlov is complex and needs to see someone with experience.

Hey Pavlov, I just saw this pop up in Active. Huge sympathies, I'm sorry it's been so bad again this week but glad you're feeling a bit better today. Is that the zombie drugs helping do you think?

MissEleanorLavish Sat 09-Feb-13 17:35:53

Great to hear you're feeling better - and do watch the inner thigh tingling, that was a big sign for me that the nerves were getting more & more compressed (I think it's on a different nerve distribution that the usual L5/S1 (which is more down the edge of the leg/foot) but that might be totally wrong) The size of my prolapse meant that I had to have surgery, but showing CES symptoms meant it was sooner than planned.

Mad makes a good point about out of hours care - are you going to call the consultant's secretary on Monday and see what you can do? (My old physio did that for me when it first went - and it worked - had an appointment 2 days later!)

when I was struggling in the summer a phone call from my gp got me a rheumatologist appointment.

PavlovtheCat Sat 09-Feb-13 18:04:18

joyful no, I don't think the zombie drugs are, because I have only taken two days of it, and didn't take it yesterday, because I simply cannot be groggy in the morning. I need to get up. It's just not ok to have me laying in bed every morning until I can haul my ass out of bed. Although, maybe the two days did help, we will find out tomorrow the those two days wear off. PM'd you.

PavlovtheCat Sat 09-Feb-13 18:05:15

denial my GP just says 'oh, least you are in the system they are very busy'. I called him on friday, he didn't return my call until 3:30pm when I was doing school run, and was not available when I called back.

PavlovtheCat Sat 09-Feb-13 18:08:01

I have, however, got a call from the 'assessment and referral' which is a central team who i have to speak to to arrange pain clinic appt. no such thing as emailing pain clinic, no. gp gets one of the 'girls' to type out a letter, post it, then it goes to a central system, they call me, check some things, then arrange pain clinic to offer me an appt. shock what do you reckon, 2 wks? 3? for an appt?

PavlovtheCat Sat 09-Feb-13 18:25:27

eleanor yes whole inner thigh is disc above i think? the numbness is right in the groin of thigh but is not that bad, the pain almost entirely 'through' my butt, hip, leg, deep in, and numbness is back of calf, side of foot, last two toes, heel etc. I don't think any other disc has 'gone'.

Thing is, no-one has told me anything, not even in this convo with blokey yesterday, I have not got the MRI report, just a vague hint. It's like it's a secret.

I'm afraid I wouldn't get your hopes up about pain clinic.done of the arthritis forums report several months wait for an appointment.hopefully I am wrong

eleanor I did a lot of work pre-op. I had aromatherapy with relaxation massage (chose a specialist familiar with back injury). So I had a certain smell associated with relaxation, positivity and healing (checked there were no contraindications with other medications). I took it easy for a week, then no lifting anything heavier than a kettle/driving for 6 weeks. I was back at work 2 weeks after the operation (had a family member to chauffeur me!)- had to get the doctor to sign me back on as I was crawling the walls at home. I know you're now post op- but maybe someone reading this pre-op will benefit from thinking about how it may help to prepare pre-op.

In hospital I was forced to stay in bed the day after the op but was up and able to go home the next day (could do stairs, etc.) when other patients were only just thinking about getting out of bed. I'm sure a huge part of this was the mental preparation done beforehand and the great support during and after the operation. I'd been told I would need at least 6 weeks off work and the medical staff were very surprised at how quickly I was up and active.

And I still remember that first tentative post-op wiggle of the hips and the sudden realisation that I was pain free for the first time in 2 years.

PavlovtheCat Sun 10-Feb-13 09:10:19

world oh, that just sounds fabulous, the wiggle of the hips! great pre-op tips. Although I am not anticipating surgery either a) ever or b) in the near future, I have changed my lifestyle somewhat, and I love the idea of mentally preparing in the way you did. One of the reasons I am apparantly 'suitable' for surgery is my mental attitude towards it, to the expectations, and towards taking responsibility of my own own health, being trying desperately to get myself healthy with yoga and pilates (body balance, love that!) and improving general fitness trying to strengthen core muscles etc, but I have just had to freeze my gym membership as had to acknowledge that I just cannot do any real exercise right now (but am trying when able to keep my reverse sit ups going and toe stretches etc ha ha when not in too much pain).

denial I am not getting my hopes up either for a) date any time soon and b) for them to do anything my gp has not already done. Although maybe some acupuncture? That's possible I guess. Hydrotherapy? I really could do with a good massage, that would help wink.

Talking of which, I have been given the name of a chiropractor (several names!) who does a particular type of work that involves small taps on the spine? I can't find the name of this type of practise, anyone heard of it? had it? I have been told by lumbar pathway NOT to use chiropracty at risk of it rupturing my disc completely. But, there are so many types, and this one sounds good!

no no no to chiro just no.

LostInWales Sun 10-Feb-13 11:46:21

What denial said grin

I had acupuncture with my physio, I don't know if it made any difference, hard to tell because I was just getting used to the tramadol then but I can tick it off my 'things I've tried list'. Stopped with the physio for now though as he felt there wasn't anything more he could do until my pain levels were better controlled, so here I am, lying on my electric blanket, waiting for the appointment.wink

PavlovtheCat Sun 10-Feb-13 13:36:49

ok, no chiropracty then! grin

PavlovtheCat Mon 11-Feb-13 17:20:54

ok, so I am going to be cheeky and link my blog.

I am hoping at some point to have some guest bloggers coming along with some advice, or experiences they might want to share, so if you want to be part of my blog let me know as you all have a lot to share. There are no prizes for grammar, spelling, bookselling type prose, so it doesn't matter if you are not Caitlin Moran. My own writing is appalling, so don't hope for fame if you chose to post!

I went silent on my blog through this last episode, completely and utterly silent as it was just so hideous. And I sort of regret that, as, it was a key to my changing pain levels and episodes. I might write a retrospective post from some of our chats.

wine can't cure back pain

PavlovtheCat Mon 11-Feb-13 17:21:36

(and if you have your own blog, please let me know so I can link to it in my posts, as you are all so supportive)

MissEleanorLavish Mon 11-Feb-13 23:14:47

world sounds like you were in a great place pre op which I thinks always helps. My surgeon was v keen I was up and about ASAP after the op (they had me up walking a few steps a couple of hours after) and I've found Pilates to be fantastic (my gentle but great teacher has helped me avoid the brain blowing pain of the past) but I'm not quite back to it yet.

pavlov I've not heard great things about Chiro either I'm afraid, although some people do swear by it. The doctors I have spoken to were all a bit wary, and I've certainly preferred to be more active in my treatment, rather than passive (that way if it hurts, I know to stop, rather than have to tell someone to if that makes sense).

And I was totally against having surgery and wanted to desperately avoid it at all costs, but when I knew it was inevitable I was much calmer (and only cried to DH and my mum!).

Off to check out your blog nowsmile

PavlovtheCat Tue 12-Feb-13 09:08:21

eleanor I am like that, active in my treatment which is also why I have been so reluctant to take the nerve blocking meds such as pregabalin, as they mask much of the symptoms of nerve pain, and that bothers me that it's all done for me, and then I will push myself too far. I remind myself when things hurt that this is because my body is telling me there is a problem and if I hide that, how will I know? But, right now I have given in and started taking the pregabalin as I simply cannot bear the leg pain any more.

sb6699 Tue 12-Feb-13 10:16:03

My dh is now almost 2 years post op and he suffered for 3 years before anything was done.

Before I carry on, can I just reiterate the resounding no to a chiropractor!

Dh had been referred for every type of non-surgical pain relief, accupuncture, pain clinic, reflexology, etc and nothing worked. We eventually forked out privately for a chiro who as soon as he put his hands on dh immediately stopped and said there was something wrong with the discs and he could actually paralyse dh if he carried on! Luckily enough the guy we saw recognised the problem but imagine he hadn't!

The chiro wrote a letter to dhs gp basically diagnosing him. By this time the gp he had been seeing had left and we saw a doctor who was far more pro-active. He immediately referred dh for surgery and within a fortnight had seen the consultant and was on the waiting list.

The target time for the op to be carried out was 19 weeks (i think) and when we hadn't heard anything dh basically started to pester the consultant. Soon after we received a letter from a private hospital saying that the nhs were paying for his op to be carried out there because he had waited too long.

Basically, I think what I'm saying is if you feel your gp is being dismissive then demand to see a different one and don't be afraid to let all of the doctors/consultants involved know exactly how youre feeling. They don't seem to be in much of a hurry otherwise.

On the bright side, looking at dh now you would never know anything had ever been wrong. He is back at work doing a physically demanding job and has nothing other than a slight "tightness" every now and again.

Hope things improve for you soon.

PavlovtheCat Tue 12-Feb-13 10:32:56

sb oh thank you for that, really useful to know that I need to be more pushy. Both my GPs are telling me that I am 'nice' and 'conscientious' and don't complain unless I am really in pain, so they now know I am really in pain, but, nice as that is, it means I am not being pushy enough! I am going to call the neuro team in a minute to see if the spinal pathway guy has emailed as promised and insist on them hurrying it up.

Problem is, I am not even on a waiting list for surgery yet, this appt is only for the 'chat' about whether it is possible/likely to happen. Then I have to wait all over again for any surgery if it happens! It's just so slow.

But, it is reassuring to keep hearing the positive stories of those who have returned to almost normality afterwards, I really hope that happens to me!

sb6699 Tue 12-Feb-13 11:25:49

Oh, it will sweetie. I know its difficult when you are in So much pain, but Be pushy and assertive and if need be find a new gp.

MissEleanorLavish Tue 12-Feb-13 12:38:36

No harm in taking the kick ass drugs - I found amiltriptyline really helped me (I know you've not found it suits you) so was on that for 3 months after my first big flare up. I could function ok in the day, as long as I took it early enough in the evening (I took mine at 6pm, any later and I couldn't get up until noon!)

We paid to see the consultant too - it was the best couple of hundred pounds spent as then I was in the system. Don't know if that's an option?

PavlovtheCat Tue 12-Feb-13 13:00:47

eleanor the amytriptiline (I spell that differently every time!) was fab as nerve blocker, I just had numb patches and little pain. I just couldn't function, I pretty much lost my appetite, it bunged me up, I couldn't get up in the morning even if I took it early. And, mostly, my peripheral vision was shot so I couldn't drive! That was what did it for me, not being able to drive was the final nail.

So, I am hoping the pregabalin being 'cleaner' according to the gp will help.

PavlovtheCat Tue 12-Feb-13 13:03:08

Unfortunately, it's really not an option to pay to see the neurosurgeon early, about to go down to half pay at work due to sickness levels reaching the end of full pay, and even if I get back to work next week, it's only a matter of time before I get another lapse.

However, I do have a DLA claim going in this week, which will be backdated a few weeks if I am entitled to anything. If I do get it awarded, I will use that money to pay for quicker appt.

MissEleanorLavish Tue 12-Feb-13 19:52:08

Crikey - that drug (the one i cant spell:-/) really didn't agree with you! How's the pregabalin? Any better?

Hope the dla claim goes ok & fingers crossed you'll have your appointment before then anyway. Any luck with the neuro team today? And how are you feeling?

PavlovtheCat Tue 12-Feb-13 20:24:01

eleanor yes, it did a number on me and I gave it a good 5wks to settle down on it! Well, the pregabalin is not too bad, but I am taking slow release tramadol with it, and that makes me wired at night, so it seems the two are counting each other out. I feel droopy eyed and a little 'drugged' on it, but, I am on the tiniest amount possible! 25mg at night only. Because I also struggled with horrendous side effects with gabapentin on a low dose, and thus the doc thinks I am overly sensitive so is starting me on 25mg. My other GP gave me 50mg twice a day and I was not happy about taking it. This GP knows I am scared of the side effects! It means though that I doubt I will see any huge changes in pain levels any time soon as I know it's going to need titrating upwards.

My pain levels have plateaued out for the most part. My back is stiff and sore. My leg pain varies between reasonable (5/10) and severe (7-8/10). I am finding lying down is actually the worst position to be in, unless curled up in a ball, which is not usual for me. If I lay down, basically my inner thigh right by my groin goes numb and so does most of my foot, not the tingling numb I have had pretty much constantly, but properly numb like when you lay on your arm so it goes dead. Same with standing straight upright, I am slightly stooped as, as soon as I straighten the same thing happens, as well as increased pain in my buttock, hip and thigh, numbness increases majorly. It is like I can actually feel the nerve being trapped. Funnily the pain sort of 'snaps' or 'goes' like my back does when I move without thinking. It catches my breath and makes me gasp out loud.

So I called neurosurgery today and the person I need to speak to is the neurosurgeon's secretary, and guess what? she is on annual leave until next week. The person who was going to try and get it expedited would have, apparantly sent the email to her directly and no-one has access to her emails in her absence. There is nothing on my notes to suggest that I have been expedited (I am guessing that is the word for being bumped up the list) or that an email has been received by any other person, and so please can I can I call back on Monday afternoon once she has had a chance to check her emails? (in a professional and polite way - Do One Love).

I also called the central unit dealing with my pain clinic referral as someone was meant to call me back yesterday and they didn't. And they shut for training today at 11am and so can I please call back tomorrow or leave a number to be contacted on when they are available to return my call?

Not much luck on the medical contacts front. Oh well, tomorrow. it's not like I am working or anything <sigh>

I have upped my pain meds, well I say that, the tramadol. I have been trying to reduce it as, well I don't like it, and for no real reason that I am dependent on it and hate being dependent on any drugs where I can't just stop them. So I had reduced down to just 50mg (splitting the capsule. Bad Me) and taking codeine sparingly. but, I just cannot do it like that any more. The tramadol is not really helping the pain very much, but it's making me care significantly less and improves my mood grin. So back to 200mg (100 x 2 daily) plus 50mg as required on top up to 400mg (not done that yet though, as that will properly wire me).

I am just going to have to succumb to the meds again.

chocolatelime Wed 13-Feb-13 12:22:33

Have been following this thread & I am sorry to read that you have had so much pain. The juggling of the drugs is just such a nightmare, so hard to get right. We too have a cupboard full of the things and still DH's pain can be intolerable. Tens machine has been helpful, and a scary cocktail of medication is essential.

We are about to take another step on this journey and DH is having a microdiscectomy tomorrow. The success rate is 85% and if you are in the unsuccessful 15%, you can then can go on to have some form of nerve stimulation therapy in the future (not sure what this entails, hopefully it will not be necessary)

We really feel we have tried everything from pilates, physio, osteopaths, acupuncture, swimming, epidurals, nerve block injections etc etc. Nothing has been successful and the pain has only increased since the beginning of the year.

We have gone private to speed things up and luckily had the insurance to enable us to do so. However, the NHS waiting list in our area is actually not too long, around 8 weeks. In the end, it was a very supportive GP who realised that DH could not go on like this any longer and the referral was made. Things have moved very fast since then.

I am hoping that this is the right course of action for us, but really we were in the situation where there was no choice any more. Will report back in a few days time & will hopefully have a positive update!

I hope that you get somewhere with the Pain Clinic - they were really very helpful for us and advised on changes in medication management as well as 2 epidurals and also an x-ray guided nerve block injection. None of these worked for DH but apparantly they can make a big difference in some cases.

We are certainly apprehensive for tomorrow, but very hopeful that everything will work out OK.

PavlovtheCat Wed 13-Feb-13 12:52:10

chocolate oh good luck to your DH! I have heard that microdisctecomy has an even better/quicker recovery rate than the normal surgical procedure. It certainly sounds like it is the best thing to do, if everything else has been tried then what else can be done? I will keep him in my thoughts tomorrow and please wish him my very best.

PavlovtheCat Wed 13-Feb-13 13:32:56

12 FUCKING WEEKS! at least for pain clinic appt. and, have been told that the neurosurgery estimate of 12-15wks is very optimistic.

Apologies for my Shouty Swearing. But I am annoyed.

sad I was afraid of that angry

Fishandjam Wed 13-Feb-13 15:43:57

Hi Pavlov. Have just quickly read this thread. I had a herniated/perforated L5/S1 disc in 2010, and got it operated on in 2011. Luckily I had private health cover via my employer, so was able to get diagnosis and op v v quickly. But prior to that the NHS had diagnosed me with tendonitis and had given me physiotherapy...

The op sorted me out miraculously. I still get a bit of sciatica and I currently also have a bit of sacro-iliac joint fuckedupness (pregnancy related!) But it's nothing in comparison.

Is it at all an option for you to go private? Even just for a consultation and a talk through of the options?

MissEleanorLavish Wed 13-Feb-13 17:14:14

You cannot wait for 12-15 weeks with pain levels at 5/10 on a good day and symptoms of numbness in the inner thigh and some tingling in the genitals, you just can't - all of that points to serious nerve compression. Who can you call?

PavlovtheCat Wed 13-Feb-13 17:23:32

eleanor yes, indeed, that is where I am flummoxed. I don't really know where to go. 5/10 is ok really! I can manage on that, not great that I need to, but yes, numbness continues, continues to bother me, and nothing being done. I think, the best option is, wait for pain to increase to above 8 again, then A&E. I can't see any other way now.

denial I know, I was warned! I was just being hopeful, and actually hearing it threw me, especially being told it would be even longer than I thought for consultant appt.

fish sorry you have sacroilliac pain issues, that is not a great pain either is it? sad Private is, I suspect going to have to be an option for consultation appt. DH and I are going to have to look at finances, and I am going to have to convince DD that baked beans are nice wink. I mean, if it has to be done, and there is no choice, we will do it.

How bloody crap that people even have to pay privately, to see the same bloody person that they would see in 4 months on the NHS.

PavlovtheCat Wed 13-Feb-13 21:13:45

ok, pain in leg has increased majorly. Back is ok, tender, fragile, but just normal 'recovering from a lapse' type pain. my hip and leg, fucking hell it hurts. When I walk it feels like my hip is going to snap, also feels like it is going to snap around my ankle, or rather like it is being strangled. I can't explain it any other way. It's not an electric shooting pain, it feels like something is squeezing my calf and ankle. My calf is throbbing, and right this second I am laying down and the entire calf feels like it is on fire, esp at the back of it, as well as feeling numb at the same time. My foot is also throbbing, pins and needles and numb in places at the same time and then the pain continues into my knee, then stops between my knee and my inner thigh by the groin, where it has gone numb again, just a small patch, but it all feels linked. and the numbness, it comes and goes in waves like nausea.

It's not cramp. It's a different type of pain.

I cannot make the pain go away or reduce in any position and it is making me feel sick. Feels like the pain chemicals have gone straight into my brain, probably makes no sense whatsoever. Hip/buttock pain when laying flat is ok, but when I move to the side, it is agony. I wondered it I have pulled some muscles or something?

Surely this isn't sciatica but something else? it hurts so much right now. I have only taken my normal tramadol and am not sure whether to take another tramadol. I think I am going to have to (rather than codiene).

Could it be do you think, something like DVT because I have not been moving so much? <panics> I am worried because there is little back pain to go with it, although it does feel all linked to my back, hard to explain that either.

Fuck. DH is at work. And I don't have clean jimjams on. I will have to sort that out...

chocolatelime Wed 13-Feb-13 22:07:12

Hi Pavlov, thank you for your good wishes. What a terrible time you seem to be having. It is hard to describe in words quite how bad it can get. Sounds exactly like the type of sciatic pain that DH has been suffering from. He said that sometimes he just wants to chop his own leg off it gets so bad. Wakes him up at night, feels like foot, calf and thigh are on fire alongside numbness and pins & needles. He cannot get any relief even when he is taking 7 different types of pain killers.

Please go back to your GP, you cannot wait 4 months for a pain clinic appointment. We initially had to wait for 8 weeks to get the pain clinic appt, but DH was not suffering like he has been over the past few months.

I am hoping that surgery is going to bring the answer that we are seeking, but only time will tell.

Fishandjam Wed 13-Feb-13 22:09:17

Sounds like severe nerve pain to me, especially the "on fire" bit and the squeezing. Are you able to take NSAIDs? I found diclofenac moderately helpful.

Sounds like you're going through the mill - I wish I could do something more useful than just offer internet hugs! (If you have any genital or buttock/anal numbness, I guess you know to go straight to A&E?)

PavlovtheCat Wed 13-Feb-13 22:16:56

fish yep, keeping an eye on my saddle area smile I am taking diclofenac 50mg 3 x daily.

I have just spoken to my wonderful friend who is a nurse and assured me she didn't think it was DVT, and managed to calm me down, by chatting about her stuff and then blush me whittering on about myself for a million hours. I feel calmer now and the pain has ebbed a bit. I have taken another 50mg of Tramadol, and 4mg of diazepam. DH is due home within the next hour or so and if it is still bad, I will just go to A&E. As people here have said, and my friend re-iterated, even if they decide not to do much there and then they might be able to expedite my referral or at least put on my notes how bad the pain is right now.

The pain was so intense so quickly it make me feel like I was going to throw up, but that has passed, so guess it is calming down.

And, I feel daft and dramatic and didn't feel like I was going to cry when I spoke to my friend, but. Now I do! crap. I don't like crying.

Fishandjam Wed 13-Feb-13 22:30:02

Ooh, just cry - I spent hours in tears when I was suffering. I swear it helped!

Know totally what you mean about wanting to throw up - mine was always made worse by sitting, so after a day commuting (sitting in the car) to work, sitting at my desk, and then commuting back again, I'd be retching with pain. Horrible. I really feel for you! And I think it's easy to underestimate just how debilitating and depressing constant severe pain can be. I went a bit mental at the end, before my op - forgetful, confused, weepy, indecisive... So be kind to yourself, you're going through something that most people couldn't imagine in their worst nightmares <concerned motherly emoticon>.

MissEleanorLavish Wed 13-Feb-13 22:32:58

Nerve pain is horrific (my physio said it's second only to passing kidney stones) so no wonder you feel like crying - you're not daft or dramatic just fed up, exhausted and in agony. Watch that numb patch won't you?

Fishandjam Wed 13-Feb-13 22:41:00

Ten four to that misseleanor, I'd rather go through (syntocinon induced) childbirth again than have another herniated disc.

MissEleanorLavish Wed 13-Feb-13 22:43:19

Oh & fish great to hear there's life after the op - I had an enormous prolapse at L5/S1 and had an open discectomy last month. I already feel improved and can't believe I don't have to take a cocktail of meds every day (about to take 2 paracetamol as I pushed myself a bit further on my walk today, but that's it!). Sorry pavlov - hijacked your thread a bit there - update when you can.

MissEleanorLavish Wed 13-Feb-13 22:45:59

Fish got that t-shirt too and would totally agree.

Fishandjam Wed 13-Feb-13 22:51:44

Yes, definitely life after op! I was back at work 3 weeks post. Now the most I take is a few ibuprofen, and I can walk on tippy-toe without even thinking about it grin.

PavlovtheCat Wed 13-Feb-13 22:54:20

you are absolutely all welcome to hijack my thread to support each other, a coming together of back pain sufferers is a good thing!

crying helps. So does diazepam grin and lying down while holding the painful leg to my chest helps with the pain but makes my foot numb. I still have movement in my foot ok though just feels heavy to do so but I can do it.

PavlovtheCat Wed 13-Feb-13 22:56:33

I really want to walk tippy toe. I want to be able to do the airplane pose in my body balance class without falling over on my left side grin I always wondered why I haven't been able to balance on that foot, but could on the other side when I did that pose, and I only recently found out know why, didn't realise what it meant til I had the tippy toes test done at the hospital.

Fishandjam Wed 13-Feb-13 22:58:10

Careful not to squash that nerve too much though. Does having your DH pull that leg help? (Or is he rubbish at telling jokes?)

PavlovtheCat Wed 13-Feb-13 23:01:02

does it work to pull the leg? he is not here yet, but will be home soon, I can ask him to do that. His humour is bleak. He doesn't do jokes. He does deadpan. grin

Fishandjam Wed 13-Feb-13 23:10:30

Aargh, just lost my post!

Try the leg pull. I got my DH to do it and it helped a bit, temporarily - I guess it moved the vertebrae apart and reduced the pressure on the nerve. But he had to put some effort in - really PULL firmly (no jerking) and maintain the pull for a few mins. Used to make him sweat a bit!

PavlovtheCat Thu 14-Feb-13 00:12:56

oh great tip, i am going to get him to try that out if he ever gets back. pain still bad, less panicking now, and head now swimming with painkillers so going to see if I can sleep/pass out and get some break from the pain.

thank you all, you're all fab thanks

MissEleanorLavish Thu 14-Feb-13 00:21:49

Hope you get some sleep pavlov (even if it's heavily sedated, medicated sleep!)

PavlovtheCat Thu 14-Feb-13 08:08:41

thanks again all. Heavily sedated sleep for some of the night, woken by a toddler half way through, but felt ok with that (thanks tramadol!) leg hurts, hip hurts, lots of numbness but pain levels reduced lots. I am going to see if I can walk if off today, got to buy a birthday present for a good friend, so will see if that helps. I have just said sod it though and not tried to brave it with limited meds, I just took 100mg normal release tramadol (rather than slow release) 100mg paracetemol plus the usual NSAID etc, no diazepam though as I have to drive grin

It's so up and and down, driving me mad, but someone I know who has recently been diagnosed with MS has linked me to the Expert Patient Programme which he has just been on, said it has helped him cope with things a lot, take some control of his condition. He thought it might help me while I wait for my appts. It looks quite good so I am going to find out more about it.

Fishandjam Thu 14-Feb-13 09:39:32

Glad you got a bit of kip. Back pain and toddlers are a toxic combination! Would be interested to know what the Expert Patient Programme is.

PavlovtheCat Thu 14-Feb-13 13:15:51

I will go link it for you fish it's run by volunteers who all have a long term condition to cope with and I beleive it is run nationally but not sure.

PavlovtheCat Thu 14-Feb-13 13:16:56
PavlovtheCat Thu 14-Feb-13 13:18:12

more info from NHS website too can be referred by GP it seems.

PavlovtheCat Thu 14-Feb-13 13:22:54

definitely nerve pain on my leg. Walked and it eased, but, then walked for too long and the pain has returned with a vengeance, coupled with pain meds wearing off, and with a 3yo who refused to walk/wanted to be carried as he was tired and hungry (I did a combination between dragging and carrying in the end, no choice in the matter). In the car he ate one piece of toast and then zonked instantly before I drove out of the carpark. tired toddlers, pain and shopping are certainly toxic.

I think I am just going to have to accept this level is as it is now, plateaued for the most part then shooting upwards then back down.

MissEleanorLavish Thu 14-Feb-13 21:55:35

That is a toxic mix! How are you feeling tonight?

Fishandjam Thu 14-Feb-13 22:03:50

I winced when I read your last post Pavlov. I know you know this, but please try not to lift or carry your 3yo. It's A Bad Thing! If he's anything like my 3yo DS, he weighs a ton and is wriggly with it. I even take care not to lift/carry DD8mo more than absolutely unavoidable - means I have to get the buggy out for a journey of only a few metres, but so be it.

How are you doing tonight?

PavlovtheCat Fri 15-Feb-13 12:58:17

Hi guys. I didn't post last night as I got drunk with DH. I have been off alcohol for a long time, but he bought some very nice sauvignon blanc and so I stopped meds for the evening and drank too much, suffered for it this morning but it was worth it, had a good evening, ate some nice food and slept well until I woke panicking that I was going to be hungover! I wasn't luckily.

My leg/back gave out when I was shopping, not through weakness, but I twisted quickly without thinking and the hip/back sort of snapped and my leg buckled. I would have fallen over if I hadn't taken my crutch. I actually cried out in pain and got some looks, but no-one asked if I was ok hmm. I am ok though, recovered from it and carried on! I had to get a birthday present, which I had gone out for yesterday but didn't get due to tired hungry child, I gave up so had to go again today (he's in pre-school today) and I went to a great shop that sells everything! Didn't need to go anywhere else, got all I needed there - green man wall art, kids toys for another birthday, cards, wrapping paper, some little treat toys for the children, lunch. Could also have bought plants, a hot tub and some clothes if I so desired grin

PavlovtheCat Fri 15-Feb-13 12:59:59

fish I promise I carry him only when absolutely necessary he is getting better at accepting holding my hand now, it has been a hard slog as he used to kick up a huge fuss if I didn't carry him, as I always have, in a sling or backpack or just on my hip. But he now realises for the most part it just isn't happening. There are moments though when there really isn't a choice.

ShotgunNotDoingThePans Fri 15-Feb-13 14:36:03

Um I think I may have mentioned this to you before - if so sorry to bang on - but I can recommend Alexander Technique as a way for you to learn to move and go about your daily life without the fear of hurting yourself.

There was a study published in the BMJ not so long ago which decided conclusively that patients who had AT lessons had vastly reduced levels of back pain over a period of time, compared with those who carried on as normal.
Might be worth looking up.

PavlovtheCat Fri 15-Feb-13 20:44:49

shotgun I have been recommended some-one who does alexander technique and am due to to see her in a couple of weeks! She was recommended by a friend from work who works as an amateur actress and used her to help with her acting grin I have taken my time as I have struggled to find someone in my area that I felt comfortable using/paying for and, tbh money has been tight so I have been cautious about trying new things that cost money. But that is all gone out the window as I have to change this NOW.

I have also been recommende reiki, for those who are into proper 'woowah' grin as she said, if it doesn't help, it at least won't make it worse.

IndigoBarbie Fri 15-Feb-13 21:02:52

Pav, I can send you some remote healing work, if you're up for it? I don't ever say you will be healed, but if anything you might be chilled and that would be something for a change for you xxx

ShotgunNotDoingThePans Fri 15-Feb-13 21:06:45

I'm so glad - good luck with it! It's not a quick fix (although some people seem to 'get' it quite quickly and feel results almost straight away), but it's something you can keep up for ever and is so empowering. Oh, I'm banging on again blush.

MissEleanorLavish Fri 15-Feb-13 21:07:03

I tried reiki for something else years ago. It was quite relaxing but I didn't notice any massive difference (dodgy shoulder) but it was very relaxing and totally hands off (proper woo!) so definitely can't hurt. And I'd love to know about Alexander Technique too - anything which might help me avoid my back going again in future.

I've not drunk since before Christmas after starting tramadol again - was it lovely to have a good bottle of wine? I've had to take some codeine today - overdid it playing with my kids when really I should have been resting - so am going to indulge my guilty pleasure of a large baileys tomorrow night instead!

ShotgunNotDoingThePans Fri 15-Feb-13 21:15:18

Alexander Technique.
You can find loads of stuff on Youtube (basic lessons) and just by googling around - a lot of teachers have really informative blogs. But the best way to learn is having one to one lessons with someone whose hands can guide you to find the 'right' positions.

MissEleanorLavish Fri 15-Feb-13 21:18:20

Thanks shotgun grin

MissEleanorLavish Sat 16-Feb-13 19:09:40

How you doing Pavlov?

PavlovtheCat Sat 16-Feb-13 22:38:18

Hey eleanor I am doing ok. Leg pain has not got worse, nor better. I am so bloody fed up with it though tbh. It's there, constant pain at the forefront of my mind every second of every day, it just hurts so much and I can't stop it. I also find that for about 1 hour in the afternoon as the last meds where off and the new meds have not quite kicked in I guess, the pain is so intense like the other day, and the sensations/loss of feeling/pins and needles/altered sensations are so heightened I have to stop what I am doing and just stand there - I can't talk, feels like I can hardly breathe, and the pain/weird sensation goes through my lower back, back passage, genitals, and then eases.

There is no let-up. Not even at night as it keeps me awake. However, getting drunk helped as I did sleep for a good few hours in an unconscious state!

and eleanor you asked about wine. I have not enjoyed a glass of wine for months and months, as even though I was fine drinking one or two small glasses occasionally even while taking tramadol (bad me for experimenting, but not brave enough to go past 2 glasses!) I just went completely off the taste of all alcohol, I would fancy a glass, take a sip and not drink the rest, it all tasted revolting, like really cheap wine - both red and white, and didn't fancy beer or spirits (and I normally LOVE manhattans), but, not sure why I fancied a glass, but I actually wanted it, which is why I didn't take the meds, where normally I would be like, no point stopping the meds as I only want a sip or two. And the first bottle was lovely! A meal deal in sainsburys, and it was a Chilean Sauvignon Blanc, surprised as normally don't like the chilean wine, second bottle tasted rough, which was surprising as it was a NZ Marlborough Sauvignon Blanc (that sounds like I drank two bottles, I didn't grin but did drink just under one bottle in total blush, with DH leaving huge glass as he got too drunk, lightweight).

And today, I had one small glass of wine at a friend's house at lunch time, it went straight to my head and was yuck and it was a tiny glass too. So, back to normal for me!

Blimey I never thought I would become virtually tee-total. That is why my blog is called what it is, due to my love of all things wine!

indigobarbie I am sorry I have not replied, I meant to PM you directly, but as I went to, I got distracted by children. I will do that now.

MissEleanorLavish Thu 21-Feb-13 16:49:33

Sorry sorry sorry - meant to reply and then the days have run away from me.

How are you feeling now? Any changes? The wierd sensation in your saddle any better? That's the bit that would worry me (pre discectomy I had a lot of v odd tingles and parasthesia in my buttocks/inner thigh etc along with numb patches and it turned out all the nerves were being totally compressed!). Have you managed to get any further with the spinal pathway team /neuro?

Know how you feel about the booze - I used to love wine, and cocktails and after months on different meds I couldn't drink on I've now lost the enjoyment from it. Shame I don't feel the same way about chocolate!

Fishandjam Wed 06-Mar-13 11:37:42

How is everyone?

Minimammoth Wed 06-Mar-13 20:38:24

Hello Pavlov, I am traned in Postural integration ( like Rolfing) and I don't think it would be the thing for you ( and is expensive as it works through the whole body systematically). Things like Alexander technique will help to train you to align your body and minimise pain. Sometimes healing works, I am happy to send too. Visualisation can help with pain relief. Yoga therapy too.

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