The Back Story

[Matildathecat]

Hi to all fellow back sufferers. I've been on Spooning for a while but don't really feel I fit as I'm not actually ill, just have a chronic (and permanent) back injury. So please post here, no niggle too small. We can share experiences, tips and moans!

Quick history, age 48, last year had sudden crippling back pain eventually diagnosed as disc prolapse L4/5. All conventional treatments tried and failed so had micro discectomy privately.

No progress, and much worse leg pain followed. V long story short was finally seen by second neurosurgeon who diagnosed severe scarring around the nerve root as a result of the surgery. Poor outlook for surgery but we gave it a go, so had second op with similar lack of progress and final MRI showed even worse scarring. Only option chronic pain management . Had several injections with not much effect...

So, permanently disabled, use a stick, endless drugs and a lovely blue badge. Along the way dismissed from career of 25years for ill health.

Sorry, it's a grim story, but hey, I'm ok. Not depressed, have an okish quality of life with the help of my fantastic husband and friends. I walk, albeit slowly and not far, swim a bit and can please myself. Luckily my boys are young adults.

So come along and share. Moans and groans ok, tips and recommendations welcome.

Just don't tell me to see your lovely chiropractor, I might just punch you!(wink)

Matilda,I've (disgustingly and as handedly) just read your initial thread post for the first time. Please forgive me. My head has belonged to a rabbit in headlights. I've only been able to indisputably selfishly scabs he around for advice and support for myself. Didn't have the eyes (literally couldn't take in any information about) anyone or anything else. This shocks and disappointed me as I'm soooo not like that.
Anyway, I thought your 'back story' was really so frustratingly awful. And yet you still delivered a punch line (like the pun?).
Well, huge hugs coming your way (gently). I'm glad you aren't depressed. You've been through so many ups and downs, periods of waiting, confusion, being sent back to the drawing room (known as the operating theatre/ friendly MRI machine). You're a real inspiration for creating this thread and I'm ever so grateful.

Oh, and I can't remember who told me how annoying it was when doctors, nurses, physios, food people, visitors, care workers etc stand behind me to talk (I'm laid on my side strapped in by a catheter and leg pumps) but it's soooo true and I didn't really understand what you'd meant. Now I remember what you said all the time. Bossy pants here embarrassed everyone by asking them to come in front of me so that I can see their face- rather than strain my neck and eyes!

Thanks, goodness, it's been a lifeline to me chatting on this thread. Only those 'in the know' really get it. Unfortunately. One day I'll tell you the whole sorry story if you're interested. In the meantime please get on with Breaking Bad. (Prefer Madmen).

Have you made that complaint yet? Please do. For you, for me, for every poor urine-soaked, humiliated,scared person like us.

Wishing everyone a day as easy as is possible. Thinking of you all. I'm off to sleep.x

I tried posting earlier on my, frankly shit, mobile phone. I gave up. goodness O.M.G. that's disgusting treatment. No, absolutely you are not being sensitive, expecting too much etc, to be left to lay in your own wee due to handover is shocking, to be left to wash yourself and by all accounts be watched doing it is horrific, and for a nurse who is caring for someone who has just had major back surgery to even vaguely winge about picking up a magazine due to a bad back, FFS!, if she is not allowed, she should a) not be doing that job any more (and we know they can fire people quickly enough when they want to for back problems etc matilda ) or b) there should be an alternative in place to support the back related work she needs to do, ie someone else to come in. She can't just opt out of her job! I am so sorry that with everything else you have experienced this. I hope you have had the confidence to complain to the ward superior (sister?) and ensure you don't have to deal with these people again.

I had a situation with puking and buzzer being ignored and the nurse moaned that 'you are not the only patient on this ward you know'. And then had a nerve, when I was crying (a nicer nurse asked what was wrong and obviously told her she was a bitch or something) 'you sure you are ready to go home? if you are still being sick, then perhaps you should stay longer, i will talk to the doctor' to which I was clear that at home, I would not be left in a pool of my own sick, and I wouldn't be treated like I was a pain in the arse' so absolutely I was not sticking around thanks!

On a 'me' note, I've been to the gym again! woohoo! I am definitely currently in the 'fuck it' mindset and just cracking on with things. My leg pain is definitely definitely radiating from my lumbar area, I can feel where it is starting, and when I press down, it hurts even more and right into my legs/feet. It is deep inside. I have two numb toes in my left foot that were intermittent between feeling fine/prickling/completely numb, and now they are prickly numb/numb pretty much constantly. But, for some reason, I have no idea why, the cross trainer seems to eleviate almost all pain! As long as I don't wiggle my back around too much, you know keep on an even pace i have virtually no pain. If I shift ever so slightly wrong, it twinges in that way that makes me cry out, but I can carry on. I think it's that there is no impact in the exercise. I swam after, met DH with the children as they can swim at my gym in the afternoon, and bouncing around gently with the children, any form of twisting, impact, even in the water, that aggravates it. By this evening leg pain is horrendous, but, I can manage that I think as long as I have a productive day with lots of painkillers.

I return to work on Wednesday. GP said he didn't want me to start on a full week back, start gently he said. I am a little worried as the worst position is in a normal sitting position. Funnily, laying back in the sofa, although bad for posture, that eases pain, and sitting in my Poang chair with my feet up on the stool, that is my best position. I think I might just stand up at work for as long as I can. It will weird my colleagues out, but, fuck em, they either want me back or not! It's going to be strange returning, as since my absence, the whole privatising of my employment has been finalised, for everyone, and the mood will be interesting. For me, it was always going to be the outcome i got, people are going to be upset, but, we knew this a year ago, so it's no surprise, just on paper in our hands now. I actually feel relieved now as I can just get on with my job and if I can get my health sorted, it might lead to more career opportunities. Ah, but health, that's the rub. It is going to either be a fabulous change, or it's going to be the end of the road. But change is happening, and I am ready to embrace that in whatever form it may take.

I hope everyone is having reasonable pain levels this weekend.

scone come back and tell us know you are!

live that additional pain in your spine could be how you are holding youself, your muscles may be or have been spasming and affecting those higher up. When I saw the physio before surgery (guy in pain clinic) he said that all my muscles in my back from lumbar through to thoracic were basically locked, and permanently solid due to the constant spasms they had endured for some time. I wasn't tensing them, I was as relaxed as I could be and he was prodding them saying they were basically a solid mass. He said this was memory of the muscle or something, due to long term inflammation, they wre locked into that position and I needed to work on getting them unlocked. He had proposed physio treatments, but I had surgery and that all got delayed. My muscles didn't hurt hugely at that point, but i just couldn't stand straight, but had been trying to 'sort my posture out' which had been forcing the muscles above the lumbar muscles to work too hard and so they locked, and they did hurt due to me forcing them into 'normal' position.

I wonder if that is what has happened with you, whether, even if your muscles are no longer in spasm, they were for a while as they protected the damaged area, and need some help to unlock them? But, you are having physio aren't you? So, maybe not as the physio should be dealing with that if it were. I would mention it to your physio, see if they can see if there are muscle issues there, transferred from elsewhere.

I meant to say also, a friend of mine, well, her sister, she has significant trouble with her knee. Has done for years, had several operations on it and it's not great now, swells in the heat etc. She had some back pain prior to knee problems, that got sorted on it's own, then few years later it returned, post knee problems. She has been told that her knee problems were actually caused by her back problem. She had dealt with her back pain by changing how she walked and leant on one side very slightly and this addressed the back pain, but also changed her gait. She put too much pressure on her knee. It turns out she had several prolapsed and degenerated discs which were probably prolapsed at the time of her first lot of back problems. She never considered it, as she had automatically changed her gait without realising it and her back pain resolved itself in time. I think of her every time my knee twinges, and address my posture!

PavlovtheCat I have two numb toes in my left foot that were intermittent between feeling fine/prickling/completely numb, and now they are prickly numb/numb pretty much constantly.

is that been addressed by someone, this sounds quite bad

GoodnessKnows - I am really shocked about uncaring those nurses are

I hope you are able to talk to someone in charge. Maybe having a word wit ha doctor in charge could help?

Thanks Pavlov I know my posture is not great. The physios seem concerned about how I walk and I am trying to walk how they showed me, but its hard to remember. I will tell them about this new pain when I see them.

Like you my worst position is sitting down and I am getting on well at work now (in a kitchen) except for the bending and lifting which I am trying to be careful about. In a kitchen you always work standing up and there's no reason you can't stand up in an office, but would have to move about a bit. The computer would be a problem if you do much typing but it could be ok if you don't need to use it too much.

I have been reading back pain for dummies it seems quite good so far. I feel like I need to do more to help myself. I have been trying to catch up on a few housework jobs today, feeling a bit tired now, but pain not too bad.

anti once upon a time I would have been at numbness. But, this time last year, most of the left side of my left foot was numb, end two toes completely numb (like when your toes have gone numb from cold? that's also what it's like now, except it also feels from time to time like that frost bite sensation of feeling returning, hurt and numb together!), also had numb patch on calf, and for a good few weeks/months I had days when I couldn't feel much of my leg. I remember posting thinking should I got to A&E and got lots of people telling me to go, and I had been in so much pain, for so long, I couldn't tell anymore how much pain I was in and so thought, if my GP and the physio and the spinal pathway guy who I spoke ot on the phone weren't sending me to A&E, it can't be so bad, these people know what is happening and they are not worried, so A&E will be like 'why are you here?'. I now know it WAS so bad and if I had gone, they might not have sent me away, I may not have waited 17wks and 5 days to see the neurosurgeon from my January Spinal Pathway appointment (18wks is the NICE guidelines for maximum waiting lists), they may have just dealt with it there and then. Whatever was going on reduced enough for me to muddle through, but I had numbness right up to and following surgery, but feeling did return.

So, two numb toes, although i know that it's a problem, it appears the medical profession couldn't give much of a shit. However, if I ever experience pain like that, where it was so bad I almost couldn't beleive I was in that much pain, then I am going to A&E. And I suggest anyone who has pain they cannot manage at home, get the fuck to A&E, even if they only pump you full of painkillers and send you home, they also might not.

Oh I need a new book I have Back Sufferers Bible by Sarah Keys which I found fab. I love reading all that shit about what goes on inside our bodies and would spend ages going 'did you know?...' and 'wow, that's me! I recognise that! I'm going to try that exercise!' to DH, he was fed up pretty quickly!

Unfortunately, despite my job technically being working with people, I spend about 70% of my time on the computer doing risk assessments on these people, assessing their risk of harm and offending, and writing risk management plans (rather than spending time working with them to reduce the risk of harm and offending...) but soon that will change! I have heard this new private side of things won't have responsibility for risk assessments, and we will do more hands-on work. Yeah right! Shame actually as I do like the risk management work. but, I digress, as usual. I have to type most of the day. I have adjusted my desk to allow me to stand by bastardising things like my lovely posturite folder holder to be my keyboard holder, and my index card box raises my mouse, tilt the screen and there we are, suited for standing I have a ver ver expensive, pointless 'back specialist' chair which I might ask them to change for one of those kneeling chairs. I might get that in quick before I change employers new desk that raises and lowers would be good too. Am I asking for too much

It's hard to work on posture properly, you have to practice and it doesn't always feel good to do especially if your muscles are not used to it, it actually hurts! Have you tried, or can you try, pilates? I know it's mentioned a lot, but that's because it's great for naturally aligning posture as it puts back the natural 's' into your spine as posture is not just about standing 'straight', it's a relaxed straight and you actually need to address abdominal muscles and breathing from diaphragm (which is one aspect, i think, of the alexander technique that works). Pilates, Yoga, Body Balance (that's my favourite as it's to music) all help with posture.

I certainly AM interested. If results tomorrow/ this week dint hurl me into 'self-obsessed woman' mode again. Hope not! Feeling positive tonight. Largely due to night nurse who is pretty much an angel - smiley, on the ball and can't do enough for us. So much more reassuring.

Pavlov, sounds like with the help of a painkiller or two you're having productive family days. I hope that IOU van stand at work without too many heads turned. They should understand, no?
I was once made redundant having just had a molar pregnancy. Horrendous on both counts. I was convinced that it was 'the end' of a career I'd built up to. Reality is that it forced me to search put other avenues I'd never ever have jumped to but which are actually far better for me. Happier. More fulfilling. More profitable. Much easier and own boss. (I hope to be able to go back to it as fully as before).
People told me the old blarney about Dixie's closing and things happening for a reason. I knew that they were wishing me well and had faith or had experienced that themselves - but I certainly did not believe them.
They were right.
Pavlov, doors will open for you. You may need to have a good think n do further training as I did.
It'll be fir the best in the end.
And things do happen for a reason.
But these things don't in life shitty back crap!

And what on earth is a p(somethingorother) chair? Curious

I'm expecting results any day this week - from tomorrow. Absolutely terrified. Highly anxious. Might help my low blood pressure though. Lol
Either low grade sarcoma (cancer) unlikely of further treatment or care but would be monitored for regrowth.
Or
Bastard aggressive type of benign tumour calked fibromastitis that re grows commonly as doesn't like to be disturbed and only resounds to high doses of chemo, radiotherapy and cancer-fighting drugs.
Please stand with me and hold my hands. If it's not good news, I dint think I'll be able to handle it. It'll throw everything into the air. Future. My DCs' lives. DH wig recently lost both of his DPs within 3 years. Everything.

pavlov the back pain for dummies might be too basic for you but i found it in the library. If you had a look at it i would be interested to know what you think. It is quite easy to read for dummies and covers a lot of different subjects. I found the Sarah Keyes one very detailed And had to concentrate to follow it, also I read it when my back was really bad and when she described how the pain felt with different conditions, e.g you will feel a searing, agonising pain down your leg it somehow made me feel my own pain more and I had to stop reading! The dummies book has quite a lot about the mental side of pain, obviously there is a connection like my reaction to those descriptions, but not sure how helpful it is for doctors to go on about this, i don't think it is mostly in the mind for most sufferers. But on the other hand if you can't be helped by treatments, you have to find some way to cope with the pain. So from that point of view it is useful to learn how to reduce pain perception.

goodness i hope you do get your results and that they are good news. Glad you have a better nurse tonight. Let us know how you get on.

Just woken up mid-nightmare of being given bad news by smiley 'minimising don't scare patient' surgeon.

goodness I'll be holding your hand for you.
I am at work (start at 6, finish at 3).
I can't even imagine what you are going through. I hope you will have more of those nice nurses sent your way.
I've been bed bound with back pain on 2 occasions 2 days each time and remember it being terrifying.

pavlov - have you tried pilates for strengthening your core muscles? I am seriously thinking of going for a few 1-2-1 lessons to learn how to do it properly.

Antimatter (self corrected sorry). Thank you. Will squeeze tightly, so be prepared with steel-fingered gloves.

IMO Pilates is the absolute best thing for core strength etc. I try to see my instructor once a week for one to one. In fact she does half an hour release massage the we exercise. It's the bees knees. Hugely expensive but I'm an exerciser at heart so it gives me a tiny taste of normality.

Having said that, I was doing Pilates every week plus swimming hard 4-5 times a week and look what happened anyway . Still, no pity party for me, I'm trying to be Mindful and do stuff anyway. I have my Pain Mangement course to thank for that. In terms of pain being in the mind, well it kind of is. Not imagined, of course, but how you perceive it. I can distract myself mostly but truth is I take the drugs. I'm probably addicted. Who knows? If my back ever improves sufficiently to not need the meds I will detox with glee.

Today we have been to this place

www.gardensbythebay.com.sg/en/the-gardens/attractions/flower-dome.html

It was great though I was in bad pain before we even started so despite the slow release tramadol, naproxen, gabapentin and cocodamol I have ended up in shocking pain. Lying down now so easing a bit.

SIL said it was really tiring walking so slowly with me , though she didn't intend to be mean it upset me.

goodness, so glad you have some nice nurses! too. I know where you are coming from but discussing your 'incident' with nurse in charge should absolutely not make you unpopular. I'm quite sure everyone knows how lazy and unpleasant she is. I really hope I was always nice to my patients. I've had some pretty awful times as a patient, too and sadly you remember them far more than all the great people. Hope the vile dreams disappear and you can have some much better ones...up close and personal with George Clooney? Hope you can breathe when the panic sets in.

pavlov, you're sounding feisty! Don't overdo it and good luck with going back and all the changes.

Sorry, way too long. Have a good day everyone.

matilda that place looks lovely! But a lot of walking. I hope your pain is easier after resting, remember your trip is meant to help you relax so take it steady too!

anti I have done, try to do, Body Balance, which is thai chi/yoga/pilates, for core strength, but lately I have not been able to do the full class as it's too much. I do need to do more, but the only pilates instructor I know who does 1:1 is my boss's wife he goes on about it lots and suggests every now and again that i consider 1:1, hint hint. I am not sure that's a good idea . I will return once my fitness levels are up again, as well as being good for core strength, I really enjoy the class. But maybe I should do straight pilates as Body Balance is a little faster than yoga and pilates on it's own, done to music (which I like), so maybe I should slow it down a little. Although, last pilates class I did hurt a lot!

I feel better today than I have for a while. I think the meds are slowly kicking in, although I expect by the evening I will struggle a little, at least I can do more in the day. Although I have done bugger all today I am getting my hair coloured/cut tomorrow, so that will be the test of how long I can sit for before I return to work on Wednesday. I think returning to exercise is helping too, certainly helping me mentally as I feel like I am doing something to help myself again instead of just waiting for it to all get better. I think I am even looking forward to returning to work, although ask me on Friday and I'm sure the answer will be different

goodness glad you have had a nice nurse to look after you, I hope that continues. I will be thinking of you this week and hope you get the best possible outcome from the biopsy results. Has Mr P appeared yet?

Is this rain EVER going to stop?! I do love a bit of walking in the rain, and used to enjoy running in it, but even for a water lover like me there is only so much I can take!

Hope everyone is ok today and 'going steady'.

live I do think mental attitude helps with pain and is something I have not been so good at, I easily slump into woe is me when my pain levels plummet and that's not a good thing. I remember reading about/talking to someone about using techniques to hide pain, I so wish I was better at mindfulness. I should probably look into it in more detail and spend some time addressing my mental attitude rather than my blinkered 'it's not really happening to me' attitude. I flit between trying to accept and address where I am at now and not wait for a 'cure' to thinking sod that, I am going to get better I don't need to come to terms with this and accept where I am at now. But, for my own emotional wellbeing it will be better if I do consider this as a long term problem, and if it gets better, then fab, and if not, I have found a way to deal with it. I might take a look at that book, as different perspectives are always good.

Matilda you definitely deserve a holiday! Its many years since I stopped in Singuapore (on my way to Australia for a new job) but the gardens are the things I remember.
Pavlov glad the cross-trainer is working for you. Just take it gently. I use a gym really just to keep everything moving. I find the walking thing and the cross-trainer quite useful, because the movement helps loosen things up, but set a max for my heart rate as I have tachycardia. At first I was embarrassed going so slowly but I am quite certain no one notices!
Antimatter sorry your mid back is playing up. Perhaps its a compensation. This is what my chiropractor is working on. I now also wear orthotics to allow me to walk without harming my knees further. My back plays up more if I forget them ( or stay in flip flops for more than a dash to the bathroom in the mornings).
Goodness thinking of you and those around you. Not knowing what you might be facing exactly is the hardest time. I am appalled by that nurse (although I have experienced neglectful care too in the NHS). After all its possible to be gentle, empathic and supportive even if personally unable to change a bed or lift a magazine. Well done for getting through to the staff- I hope the nicer staff look after you in future, and the specialists have all the best support to get you the best treatment available. SS can help in a crisis and I think are better able to understand the effects of a critical maternal health crisis on a family than ASD. They can quite quickly organise direct payments to pay for a home help or child care (or both) if needed in a crisis. It took ages in our case because it was not critical by the time I was well enough to ask for help!
Dh bought me some lovely shiny over the knee flat boots! Walked quite a distance (for me) yesterday in them and am not too bad today!! My knees ( not a pretty sight) were covered up and warm and I think they look good! Result!

PavlovtheCat - I also noticed that some osteopaths teach Pilates (60 pounds I saw in one place, zone 5 London). I am hoping that my insurance will be able to cover it.

magso - I t\remember writing about bead mat for my car journeys, I bought it (cheapish on ebay for 7.50), the elastic supporting it snapped within a month of using it ( I think I should be able to fix it) - not sure if it made nay difference tbh, so I can't recommend it

magso oooh do you have a link for the boots? They sound gorgeous! Footwear is so important. I am realising that to aid my proper posture and gait I need a huge assortment of different boots and trainers