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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!

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

expert patients

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.

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