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 oh that just sucks I am so sorry to hear that. I agree about bad backs and mental health, not easily fixable, they can't always see the problem, and they know it won't necessarily get better, and unpredictable at times.

My employers have been largely good 1) because my recent boss has a disability herself and stretched the boundaries of what she was allowed to do/interpreted the disability/sickness policy with some spin to allow me more flexibility to stay in work (like, technically, if I work over half my working day and leave due to sickness it doesn't count as sick on my record, so, when my extended phased return was refused higher up, she followed this principle by saying that as I had worked my half day and was unfit to stay at work, I should go home! The deal was that, on the days I felt up to work full hours I would, but if I struggled, I would have that get out if I could make it to lunch time. She also let me come in late and leave early accordingly and make my hours up on my shorter days. And, she would leave it as long as she could possibly get away with before formal HR meetings (46 days absence for one period). but she knew surgery was looming so she was getting me through, 2) my HR boss, the BIG HR boss, her husband has had spinal fusion, when quite young actually, and has ongoing problems from this, so, she came from some understanding, and probably went home to check with him I weren't faking it , and me and her go way back, including some conflict that we got resolved, she knows I would not mess around.

But, my old boss is gone, my new boss is a different breed, he has been recruited to weed out the shit staff. As soon as i had my surgery he had organised a case conference and indicated it was not a disability. Luckily, I am a fighter of stuff like that so made sure the HR boss confirmed that it was a disability and all my sickness related was recorded as so. But, he is not someone who will let any sickness go. my other boss would have told me to go home and not return until I was feeling able to work properly again. This boss said to me when I told him I was in a lot of pain 'so, how does that affect your work?' and that was it! (not that he listened to the answer ). And the HR boss, I heard rumours she is jumping the sinking ship and taking redundancy of an amount not to be sniffed at.

It will be interesting to hear how the Alexander Technique works. I hope you make it to the cinema!

oh and yes to OH. Three times. Once on the phone, got a new chair. Second face to face with a GP, got another new chair, headset and little paper holder thingy and a confirmation of disability for equality/recording. Was told they needed to give me more flexible working. Third time was post surgery, he said it was not a disability (luckily already recorded as such so remains that way for good now), he said that the only adjustments that need to be made are no heavy lifting, bending until I feel ready, and a phased return of longer than they were prepared to give me. I might ask for another one to support a change of working hours, but in reality they will probably let me have it if I just write a letter asking for it and cite it as a disability related adjustment.

I can't beleive your employer wouldn't give you time off for surgery and post-op recovery! Surely that is illegal under the Equality Act? I thought you had to be given reasonable time for rehabilitation, even if it was unpaid time off?

OYBBK I like the idea of that injection just for a bit of sleep and then a cuppa after!

Take your own snack though. The two biscuits I was offered didn't really cut the mustard after a 12 hour fast.

I've had back problems for 30 years and the frustrating thing is that every practitioner has told me something different and prescribed different treatments. For me it's just a question of managing it. I've had Bowen, acupuncture, deep tissue massage, Alexander technique, physio, osteopathy etc. yoga and pilates can help but can also aggravate it. Some days the only thing that relieves it is simply lying down. Prozac helped too as it used to make me really depressed. I don't think there's a holy grail, just trial and error really.

Slightly odd treatments that helped ( short term) was sound healing and masturbation...!!

Read recently that antibiotics may be able to help many sufferers. Watching that with interest...

scarlettohello i like your honesty endorphin and hormone rushes are fab painkillers! I have also heard about the ABs and if I find I am subject to 'non-specific backpain' once further investigations have either not started (it's all soooo sllooooow) or proved fruitless I am most certainly up for trying that. I read that something like 40% (possibly made up from me, but something like that) of backpain started at some point as a result of infection of some kind. It certainly makes a lot of sense when it comes to conditions that have been linked with other conditions that might or might not be triggered by infection/inflammatory responses of some kind I have read that ME/CFS, fibromyalgia, and even conditions such as RA and MS, lupus, could be linked with having had an infection of some kind (most likely an undetected infection) that produced excessive inflammatory response in the body, and in some instances, it may be that the body has reacted to it - not sure how plausable that it, but it certainly would make AB treatment more likely to be a success to some degree if that were true (although my understanding is that those conditions remain long after any infection).

I do know of a MNer who has tried the AB treatment, she asked to try it as soon as it became known about. She has spoken of some success (no miracle cure). I won't say who though, as she may well come along soon (when I prod her to) and tell you all. Or not

Oh yes, and lying down! Sometimes, I think that whole 'don't lie down for long with a bad back' business is just to get us back to work. I swear that sometimes nothing works as well as staying bed for several days.

Diazepam works too. But, unfortunately, can't be taken daily. Well, not without buying it off the street

and sorry to hear you have had such a long rotten time of pain

oybbk that's poor form isn't it? you would think they could manage a decent enough biscuit.

You'd have thought so. Next time I'm going to get a pizza delivered to my bed

oh you so got to do that! I did that at work once, and the look on my colleagues' faces were priceless. I can't imagine how shocked they would be in hospital. Although, I bet it wouldn't get that far. They would confiscate it before it got to you, and they would eat it themselves i would

Pavlov and Scarlett you are so right about lying down being the best cure for back pain. I swear that a day of bed rest is better than anything else that I've tried.

Ohyoubadkitten, I was given two slices of buttered toast after my sedated injections which is slightly better than biscuits but nowhere near the joy of eating a pizza!

mouldy real butter?

I'm not sure if it was real butter as I scoffed it so quickly. It may have been

wow mouldy - I'm asking to change hospitals. Its clearly inferior where I am!

I bet the pizza wouldnt make it :( the delivery person would never find the right ward - you need gps and a sherpa to find anywhere in our hospital.

Ok, I really feel like a world class authority (well nearly) on this topic. Here are my experiences.

Hosp. No 1: nothing, nil, zero.

Hosp. No. 2: invited to gobble as many biscuits as possible. Cup of tea.

Hosp. No. 3: invited to hand my credit card over as soon as possible.

Hosp. No 4: tea/ coffee machine. No biscuits.

What seems clear is that NICE have overlooked this important aspect of patient care and safety and need to issue guidelines ASAP.

I've been to the cinema!! Went ok and enjoyed the film, Blue Jasmine. Back now screaming along with leg so what's new?

Yay for a cinema trip :) Sometimes youve just got to take the consequences and have a bit of fun.

Credit card??? What were they expecting you to buy?
I am so going to take something next time. Perhaps a big slice of cake. Mind you the woman in the bed next to me got very sick after - apparently sedation doesnt suit her - so it might be considered cruel.

Sorry, should have said hosp no 3 was private. £910 for one injection!!! Didn't really do much or last long. No sedation at any of these appts and a complete mish mash of nil by mouth/ eat what you like. Long admission forms/ sign on the dotted line. No consistency at all. And very little food .

Good gracious!! Does make you grateful for the nhs even with all its issues and slowness.

It's so bizarre the different way they do them at different places. I had 6 injections in the one go so I'm grateful for the sedation cos I might have changed my mind after a couple! . What was it like without???

Oh dear, am paying for the cinema excursion. I thought I had stretched myself out enough in the seat and took my cushion, but no. Cinema= pain flare-up..

Re having injections without sedation, it was fine. Last guy asked if it was hurting and I said 'if you remember, I am the girl who feels like she's been hit across the back with a cricket bat and has someone banging a nail into her buttock. So no, the injections are fine.'

After the injection he told me to take it easy and not go to the gym...WTAF do they think it's like being disabled with a spinal injury?! Absolutely no idea, I'm afraid.

:(

What you need is jacuzzis in cinemas with little plastic pots of popcorn that can float.
That would probably be quite comfy, if a little steamy.

Not go to the gym? Why did he think you were there?!

Waves to OYBBK my fave weather person
I'm a complete fanny. I rocked up for my neurosurgon appoinment a day late. They've not charged me thank goodness and can see him in 2 weeks time. ( still trying to get my head round the weird short waiting times going private ).
On the point of acceptance as opposed to wanting my old life back......it took a long time........now so much time has passed since I was pain free, that life has totally changed anyway. I'm finally quite good at planning life so if I think an activity is worth it, but will wipe me out, I'll have nothing else apart from essentials planned for the next couple of weeks. I'm lucky that my friends will still always invite me to things even though they know that I often say no.
I'm certain that keeping moving has helped me. I've always had dogs that need to be walked, so am out pretty much every day with them. Helps my fitness and my head. I occasionally have a day where I'm so sore/tired that I do take to my bed and take max amount of cocodamol/valium, but never 2 in a row. Actually what I really miss is having lazy lie ins. When I wake up I'm sore, so have to get up and moving. I'd love to wake up and then have another snooze.

:) peri, have you seen the storm thread?

Oops about your appt!

It's good to have friends that understand. Mine do too, but I'm rubbish at saying 'well actually, I feel pants'. I try and fit way too much in and so people don't realise how much pain I'm in. I did that today and I'm really paying for it tonight. I can't lie in either, I'm awake at 4 or 5am each morning as the pain kicks in. sometimes i can doze uncomfortably to about 6. I wish there was a painkiller that lasted through the night.

matilda oh no sorry to hear you are still suffering, but at least you did it. I love the idea of a jacuzzi/cinema rolled into one. How cool would that be?! hot tub, big screen, bowls of popcorn on the side, drinks with straws in. bliss! How are you feeling now?

perihelion I am yet to reach the planning stage and find myself continually floored by pushing myself too far. This evening was a good example Good job you didn't get charged for missing your appt. I would so hate to miss mine, I would have to wait another 6 months

I have just taken DD to a rollerdisco birthday. It was in a gym hall in our local sports complex. It was amazing actually, a huge sports hall with disco music and hundreds of kids, teenagers, adults (and a lot of people in onesies ) whizzing around. DD can't skate. well, couldn't. So, although I said I wasn't going to skate, I still had to hold on to her as she fell around the place for a long time before getting the hang of it enough to go on her own. but. not before screwing my back entirely. Did you know that the natural instinct to catch your falling backwards child doesn't go when you have a bad back? Nope, I didn't either, as my DD fell backwards more than once and I couldn't stop myself from catching her. Fucking Hell! I might as well have skated given the pain I am in now! I carried on though and she got better and better so in the end she was able to go solo, and that is done now, so I can take her again and won't need to do this again. But. I didn't once think about how I would be managing it. I didn't know what to expect I guess, so hadn't considered she would need my help (had childhood recall of a 'rink' with sides to hold on to, but nope! none of that!).

So now, I am in bed, having taken maximum codeine, napraxen, and 2mg of diazepam. The area around my scar tissue is actually swollen! pain in both legs, and weirdly, a huge amount of throbbing across the top of my calves.

Anyway, my own fault, don't expect sympathy .

Has anyone tried inversion therapy? I was reading up about it, as I was thinking how nice it would be to hang upside down for a while, I didn't realise it was proper therapy!! Does it work? Should I consider hanging off the end of my bed?

I don't lie in, but, I also don't always get up. I lay in bed in pain, knowing it will hurt to get up, so not wanting to, but not enjoying laying in bed as it's also so uncomfortable. I can't remember the last time I slept and enjoyed it in the morning. Actually, yes I can, the day following coming home after my discectomy - I woke, brushed DDs hair before DH took her to school, and before he even left the house I was goofed apparantly. Woke at midday, ate some lunch, went back to sleep, woke at DD came home. In fact, don't think I ever did that since children. No, I know I haven't

Ohhh no, will sneak over for a look OYBBK

Am blessed with my friends. I used to hate missing out on stuff, but realise that I need to be functioningish for my daughter and the daily stuff. Oh and hardly drink these days as am so much worse the next day even after a beer or two.