More Terrible Back Stories

[Matildathecat]

This is the support thread for all sufferers of back pain. Acute, chronic, agony or niggles, we are strictly non competitive. All newcomers very welcome. (Though be warned, the language can be a little 'ripe' ).

Here are our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

So come and join us for moans, advice, downright rants or just a laugh.

Pavlov I'm so sorry you feel so bad. I know, at my worst about 18 months ago, I would just sit and cry, because the pain when I tried to move was so bad, had gone on for so long, that I thought there would never be an end to it. I say "sit", it was the sitting that made the pain worse. I also longed to be able to lie flat on my back in bed. In the darkest days I thought " is this it? I'm 45 and I'm going to be in pain for the rest of my life. " the pain creeps into your mind constantly doesn't it? I got to the stage where I couldn't think, because all there was, was pain.

I'm ok tonight. I've had my mix of painkillers and half a bottle of wine. The alcohol numbs things a bit- that could be a slippery slope couldn't it? Thanks for the heads up on the feminax ultra livelablove I will get some in the morning.

loon I am in bed already. been in bed since 7:30pm although was cuddled with DS for a bit of it. I am always in bed early these days I have taken 30mg codeine, naproxen, paracetamol. I have missed out the tramadol as I sleep so badly on it. It didn't wire me yesterday as much and I went to sleep ok, but fitful sleeping, might just be in pain as 50mg SR isn't really doing huge amounts, takes the edge off, I might have to take it if this lot doesn't work, but it bloody should will take another 30mg codeine. I am also considering taking diazepam x 4mg. Muscles are tight and sore, but not spasming so shouldn't really, but I just want to be asleep so I can't feel it. But, then I feel shit for thinking that as I never take it for sleep purposes.

And, actually, none of these bloody drugs knock me out. tramadol and codeine make me wired diazepam makes me fluffy and get to sleep instantly but i still wake up.

You know what I could really do with? a whole body massage. To ease everything. it all hurts, it's all throbbing - back, butt, legs, feet. Had cramp in my second toe, wow that hurt!

Sometimes, there is not much that can be said when we are in pain, so don't feel bad, posting back is enough

Been at work, doing training which involved sitting down for too long, then standing up for too long as I couldn't sit down any more once training ended, swimming lessons and all that it entails with two children, washed and dried DDs hair ready for school disco and that was me Done.

DH has asked me to consider not going to work tomorrow and concentrate on getting over this 'difficult spell. He never suggests that as an option. He is the kind of guy who thinks 'it's only one more day, only a few hours then the weekend'. he is being really quite lovely about it at the moment, he said 'i know how fed up you must be feeling, i feel fed up for you, so you must feel worse, I am sorry you are feeling so shit'.

But, I can't not go in. I was off on Monday, I have struggled through the week, and I am on strike on Monday afternoon and Tuesday. I have asked for Monday AM as annual leave as that's a normal working day, so if I go sick tomorrow it won't look good for the strike. I have expressed my intention to support it but I don't like going sick around this kind of time, or just before a holiday or just after. Last year I hobbled in on crutches before I went away for a few days as I didn't want it to look like I was trying to extent my holiday, which I wasn't! I know my colleagues are aware I am struggling a bit, some are at least, so it would not be surprising, but still. It is only a few hours. I can probably leave a bit early too.

Matilda I've got plenty of codeine 30, it's not that it disagrees with me, as such, but it does have some nasty effects after a while so I tried to stay off it, but it's there.

I am ok with co codamol. Probably because there's not much codeine in it. I have the 8/500 but, of course, it's not as effective.

matilda {hugs} more for you my lovely. In fact [hugs] to you all. It's so fucking shit sometimes. I don't want to moan either. But, unfortunately I think it is all I do. Do you think the neck thing is due to bad posture? I am thinking that I have a slight stoop due to walking so badly, I try really hard to straighten that, but I can't seem to easily. I guess the whole spine is unhappy. You have done a lot this week though, are you able to chill for a bit? Rest as much as you can. Let me know how you get on with that heat pad thingy. You are right, this group is fab, as we get it, the different levels and types of pain, the changing pain, the good days, the bad days. We have such varied issues with our spine on here but we all have common chronic pain, or have recently experienced it and know that we cannot be complacent about any good patches we have.

downton. ok. I am now crying. You hit the nail on the head. The pain is consuming. That is exactly how I feel. I do feel now, that I am thinking 'is this it? for the rest of my life?' I don't really believe in karma, not really, but I catch myself wondering what the fuck did I do in a previous life or in this life that warranted this heap of shit? I know that's logical, but did I bring this on somehow? I know that's not actually true. I felt like this before surgery, for quite a while, but not as bad, as I had, in the back of my mind, that at some point I would see the neurosurgeon, he would agree to operate (ok, not convinced but felt that was an option), I had some hope when the MRI showed a prolapse. And then I had some respite from the pain and hope that I was fixed, and I was like 'fucking yeah! sorted!' I felt so good post op. I could not believe it had been fixed. So so good for a couple of months, then pretty good but with some issues creeping in, then worse, and worse and worse. And now, back to square one, with no real feeling that there is going to be an outcome that will bring an end to this. I have lost faith that this will ever end. I can't see past the pain. It's not high as 10/10, but higher than 'normal' for me recently.

downton does it disagree with you as in it bungs you up? Don't be shy if that's the case, we don't shy away from such topics here If not that, then ignore me, if it is that, prepare for it before it happens, drink prune juice, water, etc etc and take movicol in prep. If it's not that, pay not attention to me !

you definitely need anti inflammatories though. Definitely. I still double dose mine sometimes as I know it's inflammatory. I don't care at this stage that the pain clinic were like 'ooh no no no Mrs Pavlov you can't do that! in fact, you should be trying to come off it long term' er, no. It works, there is inflammation, you ain't doing anything to help that, or the nerve pain, so fuck off. Well, no I actually didn't say that. What I said was 'oh, ok, sure, absolutely' and then ignored them. I know that some people with arthritis are on twice the dose I am on. And from time to time I take two omeprazole. Naughty me. Don't copy me. I am responsible for my own stomach...

and yes to wine! I slept the best I have for ages on friday following a bottle of wine all to myself (no meds I might add). Like a baby. But, not a good idea every day. You can see why people do medicate with alcohol though if that's the effect of it. I just can't do hangovers every day

Well I didn't mean to make you cry Pavlov but I do get it. Like the pain was there in my head, in my thoughts, constantly. You can't get away from it. It takes over your life because every second you have that thought " it hurts". Bloody hell, I am a misery.

You know, I took so much hope from you last year. When I was trying to put off the surgery because I just had to get through that 6 months in London, and it was dreadful and I was having to have surgery, then I wasn't. I was so overwhelmed. And you had your surgery and it was hope, hope that if I just got through to July I too, could have the op. Then I got better. Almost overnight I was pain free. It was such a relief. I could walk and sit and lie on my back.

And then i got a bit lax with being careful, because it feels like you don't need to be careful, and slowly it's been creeping in. I decorated my kitchen diner a few weeks ago. That was a mistake. Now here I am, back to the beginning and wondering if I'll be like this forever, or more to the point, how bad I'm going to get as I get older.

Oh, with regards to the codeine. Yes that. Except I have other problems with going to the loo and those increase the worse my back gets. When I need the loo, I need it there and then. I have some loss of sensation and not much control so when I was bad, this increased and I had a couple of accidents. That was when I was admitted with suspected cauda equina. I just couldn't feel it.

So, if codeine bungs me up I don't want to have to take movicol or the like as that could end up very messy and a bit if a vicious circle. Grim.

Maizie, Fb group sounds incredible. You're v lucky. Early days with a young family can potentially be quite lonely.

I studied / read (tossy expression - lol) psychology at Uni. Loved it too!

Maizie (I think), I was warned about oxinorm and oxycodone. Pain team in hospital knew that these were essential to my own 99er. (Morphene did not work. At all- for me). The thjng is, oxi drugs are EXPENSIVE. The pain team told me that they'd had discharged patients in their droves contact them (upset and desperate) as their GP wouldn't prescribe it and, instead prescribed alternatives that DIDN'T WORK for them.
I told my gp that I knew this (and about the weak research that there is for oxi being more effective than cheaper morphene-based alternatives that cost pennies -evidence gps use to justify their decision to exchange n refuse oxis. However, I made my case clear in that oxi worked FOR ME whereas morphene ON TAP did not and I was in agony. Really was. He have it to me when I told him I knew papers were weak but pain team and anaesthatist's experience of my body's reaction to them evidence was strong made strong evidence of it's own. Hope hat helps somehow.

APOLOGIES FOR MY CRAPPY MEMORY & POLY-POSTING, everyone).
Matilda, he was a lovely doc. He agreed w me re not joking into pain consultant's wagon if injections n heavy drugs. Recommended something else. It's something beginning with R. A muscle relaxer. And I'll buy a blackout blind. Doesn't hurt. DH away next week with work. Pleeeeeease gd, let dd (3) sleep. That'd help too. Lol

I ft really reassured by doc - until I got home to read LETTER OF DOOM from Pain Guy. He said something along the lines of 'this is do-able now ... but if you don't... Gd help you!' Scared me. Emailed letter to the doc who said not to b worried and try his suggestions instead - R and a GOOD Physio, Pilates twice a week and swimming.
I've booked good Physio he recommended (had to argue the toss with health company over having 6 sessions vs the ones remaining wasted by crappy one). I've also got a free trial at a reaaaaally posh granny gym / spa. I'm purposely not choosing posy-gym most people under 70 go to. I can get a reduced rate as am teacher. So all good!). Just all this uncertainty (surgeon, consultants and docs disagreeing over my care plan) and scary letter make me... Insecure. Once I start plan laid out by doc yesterday, I'll hopefully feel better.

Robaxin 750
Anyone taken it? Addictive? Make you sleepy? How does it compare to amitriptaline?

Downton. That's crap
:(
If that's all you've got, are you at least taking 400whaysits of ibroprufen vs 200. The extra strong dose?
If you lived nearer... (I'm in herts)

Matilda, mega disappointment vs the high of receiving much-wanted item in post! Poo
Hope they're swapped or better still, refunded plus postage. Hassles! Are Fly better than (my much loved n battered) MBT boots?
Disability congestion charge thing - a little box to be ticked. Grrrr. I know the Blue Badge is nothing to do with our EYES, but I've really noticed how our eyes are clearly supposed to have some sort of compensatory super-power. Clearly.
I'm supposed to see:
disabled spot parking lines that nobody else can
Lollypop signs with disabled parking even though angled side on
Little tick-boxes

Lol

Pavlov, I could cry reading how you're feeling n what you're experiencing. Desperate for relief but given no hope of it. I'm sure that made you feel better - not. But hopefully, understood, less alone and sincerely cared about.

Yes, we on here do love our Fly boots. I've got a couple of pairs. They have a rubber wedge heel which is sooo comfy and I need a bit of height so it's marvellous to find a heel I can wear. I've also got Fitflop boots which are super comfy but less smart. Now discovered the boots I received are actually Teal rather than Petrol Blue. yes, more hassle.

Hope the pain levels are gradually improving for everyone. The jury's out here. pavlov, can't help but feel your doses are just too low right now. I've got tramadol sr 150 and still top that up. I'm iffy on tramadol, though because of the weird sleep stuff. Also, several times recently I have totally forgotten conversations from the evening before. By evening I'm so stuffed with meds and wine I'm just useless.

frozen just been looking at Robaxin which I've never heard of. It sounds good and apparently low abuse profile ie not very addictive. Few of the usual side effects like drowsiness but I'm guessing these pass. Will you take it? If so do feed back as it sounds useful.

downton not bad that I cry. I always cry when people get it. It's so unusual outside of this thread that people know exactly what chronic pain is like. I had the conversation with a colleague today, I told her that, I think about it every second of every day, even alongside other things, it owns me. Don't give up on success of discectomy if your surgeon, or you decide to go down that route, it seems that whatever is going on here is in addition to the prolapse, or a side effect of, not that the op was not a success. Possible prolapse, and I think more likely now than since last MRI as tn symptoms are returning from before surgery, but that is always a risk with discectomy. The actual op itself gave me huge relief and a glimmer of what recovery is, and I know lots who have gone on to live their normal lives post prolapse. It's just shit that you had a rare period of recovery and a chance to love normally again before it was taken awy again. It's a fucking bitch. I remember when you were putting it off due to move etc.

matilda any improvement today? Hope so.

Pain levels are high. Entire back is in spasm. It feels like a cricket bat to the spine, but to the actual bone. Legs hurt, toes numb. I can't take high level painkillers as have to drive, trying to get dd collected from school. Then I will be ok. Need to talk to GP for muscle relaxants as only have a couple left. I did make it through work though, but left early. Fucking shite.

Will post more later

Matilda, I'm just waiting for gp to approve n give it to me on NHS prescription... watch this space. Combination of scary-as-hell 'if you don't...' Letter from son consultant, falling UP the stairs as dared to walk up holding bowl AND cup (now eating lunch-carpet dirt combo as too tired to make anything else) and pmt (probably) leaves me feeling LOW. Very
Thought I'd cheer myself up by going for a smear test at 4pm. Lol
Have not dressed. Am officially 'wallowing in it'.
Was cheered up briefly and then even Zmore depressed when I caught a glimpse (and ordered) an old person's knee pad cushion with straps that I glimpsed, excitedly, I the Betterware catalogue that came through the door never usually read them. First thing I've bought that I actually NEED --apart from levitated toilet seat- in a looooong time.
Thank gd fir clothes shopping, hair dye (tried that recently) and sunglasses to hide behind. What has become of me? I'm 41!

At least one thing's not changed: my plethora of typos.
Hilarity is that... I'm a dyslexia assessor. Lol
But I know you won't care if I type n splat (click). Proof-reading is for report writing.

How's everyone else's day?

Thought I'd cheer myself up by going for a smear test

Nothing like a smear test for doing that.

Am also sniggering at thought of levitated toilet seat. How does that work, then - does it just float above the loo?

I also had super hygienic lunch if it's any consolation, Frozen - the cat jumped on the worktop when my back was turned. I think she just had a sniff! - but was struggling to care.

Leg pain not quite as bad for me today, but I'm off to do the school "run" (slow walk) now, so we'll see. Hope school drop off has been okay for you, Frozen.

Pavlov, hope you can get in to see the GP soon & get some more muscle relaxants. Do you think it's scar tissue that is causing the worsening nerve irritation / pressure for you? This is my biggest worry about surgery - thinking it's worked & then it all starting to go to shit again. Sorry you're still in loads of pain.

Running late now - bollocks.

Feeling slightly better today plus have had a fantastic release massage. I've got enormous knots all over my spine which have been pressed upon. Then had a swim, jacuzzi and steam. The spasmy pain seems better thank god.

pavlov, frozens new drug Robaxin sounds very useful. Might be worth asking about though her latest post seems to indicate good old nhs funding issues. Can be bought over the counter in the USA, though.

I've only just had my lunch, hygienically shared with the dog!

Hope you can all relax and take some strong drugs soon.x

matilda the massage sounds lovely! hope the easing of spasms continues.

frozen love the smear treat made me chuckle.

I am going to post something lovely, and not complaining about my poor old shot to shit back…a good friend of mine had her second baby today. We got a call from her partner at 6:20am or so to say they had to leave right that second, and could we get their DD for them (we already agreed to look after her if needed, so not unexpected) they had dropped her with a neighbour by the time he got there 15 mins later as they literally had to leave when he called DH.

We go. t a call from her partner at 7:20am as his dd was eating coco pops with my two, to say she had the baby 6 mins after arriving at hospital at 6:45!!!! with him panicking all the way that he was going to have to pull over. She just had time to get onto the bed in labour room, 3 pushes and baby was out! How about that for speed! Apparently (I say apparently as I have only spoke to her partner, she might have a different story!) she had contractions from 4am onwards but didn't really think they were strong enough/painful enough to be the real deal, so he went back to sleep! It was only as they got closer and closer she figured out she was having the baby there and then!

She looks fabulous in her photos! I only saw her yesterday, she looked like baby had engaged and she had some sharp pains in her pelvis but nothing that she felt was a sign baby was coming and she looked completely unconcerned about the pains, said it was baby bouncing his head against her cervix 'probably just getting into position'. Wrong! She and baby are very well, but there was no time for antibiotics for strep B so they have to stay in as a precaution for 24 hrs.

Lovely eh?! And today was her due date! She was convinced she was going to be late so didn't even have a bag packed.

I shall google that drug by the way, thank you. pain is subsiding a very little with 100mg tramadol, paracetamol, too much napraxen. I might take one of my diazepam as I didn't take any last night in the end, I am not fit for work the next day! Now I am laying down, I have sharp pain through my back and legs, not so horrendous, but there still no matter what position I am in. My feet and calves are throbbing, feels like the muscles themselves are throbbing. loon I don't know if the pain is scar tissue. I would have thought he would have seen/said something from MRI as that was December and I had the op on June so it should have been present if that's the cause, but it doesn't explain why it is getting worse, as my understanding of the scar tissue is that it occurs relatively quickly and doesn't get worse and worse (Matilda, you are the expert from your experience does it get worse, the scarring, the pain from it, over time?), but I don't know. All I know is its much much more bilateral than it was before, the pain shifts in intensity between legs, and the numbness is more pronounced in left foot, always had been, but largely the pain is relatively even, whereas before surgery is was very much in my left leg only. and some of the pain feels different, there is definitely some pain that is the same (back pain the same, hip pain, cracking/popping pain, some of the sciatica) but the back does not 'go' following a sudden activity as much as it did, although that does happen; the pain is building up regardless and gets worse following standing too long, sitting (at all), walking too long (which is hardly anything at the moment) where before, walking would ease it to some extent if I could get past the first lot of pain, and is deep deep within my spine, it's not muscular. Yes, there is muscular pain, but that seems additional to, or because of inflammation from, something else. So, the pain is related to, but not the same as the actual prolapsed disc before surgery IMO.

Which is why I don't think it was an unsuccessful surgery, as the pain from that, the worst ever sciatica pain that felt I would never use my leg again properly, that has gone. The disc prolapse was definitely causing significant problems. It just was not successful in leaving me 'fixed', it has resulted in further problems that were not there before.

Just feel like I won't ever know what that is, the HPC seem keen to just treat without diagnosis like actually the cause is not hugely important if the treatment doesn't change with a diagnosis (in fact I read that in one of the leaflets from NICE guideines), but, to me, it is really important. I don't want to not know why I am in pain. Would anyone be happy with having no identified reason for why their life has been turned upside down? it's insane to think people should not feel that is important.