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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!

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.

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

How is everyone?

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!

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 Sat 16-Feb-13 19:09:40

How you doing Pavlov?

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

Thanks shotgun grin

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 21:07:03

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 21:06:45

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.

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

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.

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 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.

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

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?

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

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

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.

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 13:16:56
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.

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 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.

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 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

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!

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