The Back Pain Emporium, Internet Shopping, Drugs and Dealing with Doctors. Thread 6.

[MatildaTheRedNosedReinCat]

For anyone experiencing back pain it can be a very scary time. What is wrong? Who can help? How long will this last? We,on this thread are here to support you;offer empathy and help to navigate the almost impossible task of getting a diagnosis and the right treatment.We are not doctors but people who have trodden this path slowly and painfully. We also chat a LOT and welcome all newcomers. It is strictly non competetive regarding pain and no niggle is too minor.

Those who have long term back problems know that the best way to help manage back pain is to internet shop for shoes, bags, and back support devices. Those who are new to back pain, these are important lessons to learn. And here within this thread is where you will learn those lessons.

You will also find other helpful advice on pain management, different treatment options from hydrotherapy and physio to surgery, experiences of others navigating the big and scary medical world, both private and NHS (and abroad from the UK) too, as well as issues around work, being a parent while managing pain and disability, and the impact on the relationships around us. Not to mention the pain of dealing with claiming disablity benefits .

Between us all, we have a huge wealth of knowledge and experience, and more than the practical advice, the jargon and information, we know what back pain is like, how much is affects everything around us, and sometimes, all we need is to have people listen who Get It.

We talk painkillers regularly,sometimes drink wine , have hot water bottles and wheat bags galore, and hold hands a lot. It's potentially all very Unmumsnetty as we do actually show some lovin' from time to time, although we Never Ever call each other hun.

If you have advice, need advice, need a hand to hold, want to do some shopping, then come in. We are friendly. We talk a lot. Come in, have a brew and say hello

This is our 6th thread, here is the 5th, which has links too the others:
www.mumsnet.com/Talk/general_health/a2203923-Back-Pain-and-Internet-Shopping-Thread-Number-5

Welcome Elf
I'm afraid that I can't help myself. Your condition is on another scale to mine but someone should be along soon. All I can do is sympathise. Life sounds very tough.
I went to look at the new house for sale after drop off at school. Not only is there no garage but there is only room for one car on the drive...not for us - shame though.
OK then one shepherd it is then. where does the solitary shepherd keep his mincer do you suppose? I can think of nicer things to do with a big piece of lamb

Mags Did it cause you trouble Mags? We have a huge garage full of crap stuff and a caravan full of my school stuff since I no longer have a classroom of my own. The conservatory has filled up and the loft is packed... A lot of it could go but...dunno...we are just not minimal people!

Elf, hello and glad you have found us even though it's not necessarily a club you dreamed of joining.

My position is a bit similar. Disc prolapse and microsecectomy in 2012. Worsening of leg pain and no better back pain. Told all was fine . Saw another neurosurgeon at NHNN in London who immediately pointed out severe scar tissue and nerve compromises had second salvage op which wasn't successful. But did see then that 'surgeon' no1 had cut into my left L5 nerve root so no chance of recovery and into the world of chronic pain management.

I've had numerous injections, pain management course, heaps of physio which I love, do swimming and hydro exercises quite often, Alexander Texhnique. Probably more. Like you, it's largely my life .

Now on cocodamol, tramadol sr, gabapentin, amytriptiline and naproxen with oromorph for top up. Leg pain is actually easier to medicate than back pain.

I also have a very similar pattern of restriction, ie no sitting, some walking is ok but slow. And I got fired from my 25 year career.

Ok,questions: sorry what's BMP? Can't comment on fusion but I know it's contraversial but what can you do? Neighbour was going to have an abdominal incision at Stanmore but they didn't in the end.

Re benefits. Now I feel cross because why oh why does nobody tell you anything you can claim PIP which has taken over from DLA. It takes forever but is backdated to the time you apply. The forms are a pain but we can't help you. I get higher rate for both Daily Living and Mobility. I use the Mobility component for a Motorbility car which is amazing. So yes, definitely claim that. It's is not means tested.

ESA is tricky. You might be able to claim Contribution Based ESA if you've paid NI in the past two years so do check. This isn't means tested and can be climes for a year. £70/ week roughly. If you don't qualify you can still claim but this is means tested unless they put you into the support group which means you are not expected to look for work. You may well qualify for this because of your meds. The other good thing is that your NI contributions are paid regardless of what group you are in.

I won't lie, the whole thing is a massive pain. Expect to appeal and wait months. I got my MP involved which was helpful. I'm now in the Work Related Activity Group for ESA and didn't have the energy to appeal so don't get any money ( this group is means tested) but NI is paid.

If you live in the London area and get higher rate PIP ( and maybe anyway) you can apply for a Freedom Pass and London Taxicard. I only discovered that very recently.

Keep posting. We do understand the grinding misery of the pain and the everyday frustrations the whole thing brings.

Sorry, re forms, should say 'We can help you'.

welcome elf but sorry you have to be here - can't help you myself but I see the lovely Matilda has given you tons to think about

we don't have a garage (or bikes) but hubby is a de-clutter nutter so not too much of a problem - if I turn my back on anything its in the bin including things I am still using when cooking so he is mostly barred from the kitchen

still loving being unemployed/retired/whatever I am ... inbetween jobs lol

I applied for contribution based benefits when I was made redundant last time but the conditions (re looking for work) were ridiculous so didn't bother and got another job quickly anyway - I trust its much different when you CAN'T look for work due to pain/mobility, etc

Total aside...my decorator says paint should be stored in the house so I have a cupboard full of nearly empty pots of F&B and a list somewhere but who knows where, of what colour is actually on each wall. Great idea if only I had fully actioned it .

The work related sickness benefits are so stupid. The fact that nobody would ever employ a person due to their health problems is irrelevant. It's all about proving you cantwork and that's very hard.

However, the contribution based ESA actually paid very easily which tricked me into thinking it was all quite straightforward .

Thank you all for the welcome.

Matilda - I've done all the nerve root injections (5 so far) and other non-surgical options. Acupuncture is the only one that ever helps - and that is for spasm as I can't bear diazepam.

Exercise is completely off the cards except walking, and I can't actually remember the last time DH and I got some nooky... at least a year ago if not more (luckily he's okay with lots of cuddles and we have a very strong marriage).

My surgeon is ultra-conservative - one of the reasons I like him is that I know he won't suggest surgery except as a last resort and when he thinks it will help. Apparently I'm an ideal candidate. He says that there is no chance of pain-free, but an 80% chance of significant improvement.

To be honest, I can't actually remember what pain-free was like so I'm not going to be disappointed!

He's based at Stanmore - the hospital is hilarious... WWII huts for the wards (which are still mixed), and the operating theatres are at the bottom of a corridor that is so steep they need a mini-tractor to get you back to the wards. Unbelievable for a world-class hospital. On the upside, the staff are lovely and uber-generous with the pain-meds.

I was in for 5 days with the laminectomy and they reckon 5 days for the fusion as long as I'm mobile. The physios are brutal and get you walking asap (6 hours after the laminectomy they had me out of bed).

BMP is bone morphogenetic protein (synthetic bone basically) - they use it instead of your own bone chips in the fusion. It has a 99.9% fusion success rate v 60% using your own. It's hideously expensive - I've heard around £15k per dose and they only need 2mg.

I don't tick all the boxes so it's a fight. If I have a fusion using my own bone and it fails, then I will get funding to use it in a revision surgery but they don't want to pay for it first time round. My surgeon won't operate without it. It's now 18 months on the merry-go-round and no op date in sight. I'm also about to move house which may mess the whole thing up again.

Terrified of changing GP. They are always convinced that they will get me off the meds for the first couple of months and not everyone will prescribe morphine long-term. Am going to try and stay with this one.

Luckily the meds are doing okay on the pain for the last couple of weeks and I'm used to the fuzziness and my memory being shot to pieces!

Thanks for the info on the benefits, I'm going to get the forms and see what I can do. Should have done it ages ago but didn't think I'd qualify for anything. Will take you all up on offers of help with them!

Ho ho Matilda our house is all the same colour now and actually I really can't see me delving into the garage to find some half empty rusty tin when I can buy a nice new one...
I think I really like this house because the garden leads out on to a pretty, cow parsley lane which is really not enough to overlook the lack of room for...stuff!
Ally perhaps you could send DH round to help us declutter!

nooky! now there's an exercise we haven't discussed

lol Berrie you would regret it - I am always sending him out to the bin to rummage for something he's thrown out when my back was turned

Hi all.

Had an eventful morning, having decided to drive into cornwall (DH drove), and got stuck, literally, trying to turn around when we realised the road we were on was not suitable for cars in the rain. Oh My Goodness. We almost got ourselves wedged, then it hailed, and any chance of moving was blown by this , as the tyres spun, we couldn't go forward (on a bank with a steep drop in front), or back. Luckily, I couldn't do anything outside of the car, so had to drive it (terrifying), but managed to force the car backwards into the brambles enough to do a 50-point turn, window down so DH could guide me so I got soaked! We made it out, just. We both properly panicked as there was no way we would get a breakdown truck there! Thank goodness we got our clutch fixed on monday, shame we burnt the ass out of it (and probably for no bloody reason as there is another major fault with the fucking thing, mechanic thinks a wheel has been hit by another car, out of line, the axle or something is fucked, so our idea of just fixing the car and not getting a new one might be no good).

Ended with a coffee by a stormy sea, so all ended well

Drove the car today. Have increased leg pain, made worse by driving the car. I hope it's just recovery pain, but unfortunately, I suspect it's not. I have pins and needles in my foot, and strange numb sensation on the top and side of my right foot/skin, which I think might be the sensation returning? It was numb before, so think this might be good, but can't tell. It's bloody annoying though. I have done more over the last few days so I think it's probably not surprising that the pain is increased. Hopefully it will settle down.

Hope you are all ok.

Sorry for your pain Pavlov but what an adventure!
An adventure is invigorating every once in a while. Would love to have a coffee by the sea. We had the most lovely February half term in St Ives last year right after the storms that took out the railway-line. It was really dramatic and our cottage, being right on the beach, was sand bagged for floods. We are on a county border and I teach in a different county to my children. Our half terms are different this year so no holiday. Not that we could have anyway with DH having just taken a fortnight (though 5 days of that were compassionate leave.)
DD was outraged when I told her yesterday we were probably not going to Cornwall this year but were going to try something new. Just need to work out what that will be now.
They have stopped forecasting snow for us which is hugely disappointing. I LOVE snow! Even though I am scared of falling on my bum and doing my self another injury. Last week they promised and nothing My relative an hour North from us got 8 inches!Poof!
Oh yeah - the Physiotherapy place rang up while I was in the BArbers with DS about my outstanding BUPA bill saying BUPA had no record of me at all. I suggested she firstly look in my file for the authorisation number I gave the physiotherapist and then use my DH's name and company when speaking to BUPA to see if that helped. I know it's just a mistake but it was the way she spoke to me as if I were trying to defraud them that got my back up!

Can you tell I have spoken to no-one but DC for the last three days? - Gabbing on about nothing. Work tomorrow though thank goodness.

Berrie, I was similarly tart yesterday when speaking with the man trying to explain why the nhs pensions agency had missed it's deadline for dealing with my appeal. When I pointed out that they had missed their own deadline by eight weeks already he was suitably embarrassed.

I told him loud and clear that dealing with all this hopeless and useless beaurocracy was almost as bad as the injury itself. Felt a bit better after that. I'm not so sure he did. ps I do always caveat a rant like that by saying it is not personal, I am speaking about your organisation.

Elf, could you walk in the water? That's very good exercise. I have a good set of hydro exercises and then reward myself with a long soak in the jacuzzi

Also, meant to ask, you do have at least, a Blue Badge, don't you? So useful.

elf I am recovering from L4/L5 and L5/S1 right sided laminectomy as we speak - 3 weeks ago to this hour, I was desperately waiting for a snack box having just arrived back on the ward carom recovery starving because I missed dinner, feeling fabulous (that didn't last...) I had a discectomy in June 2013, partially successful. Now have facet joint damage, ligamentum flavum trouble going on, plus inflammation, erosion(?) and odema of the endplates, narrowed/dehydrated/sick disc at L5/S1, and some of this at L4/L5, but not sure to what extent at that level. I had bone spurs and thickened ligament removed this surgery, think a bit of disc too at one level. I have interpreted all that stuff to mean 'arthritis' and similar to your stats, my surgeon has offered me 50% reduction in pain, by removing the leg pain, but was clearly told the back pain cannot be fixed as the cause can't be removed. So far so good, although today I have seen a fucking huge spike in pain and some cold leg feeling/pins and needles, which I have not had since surgery. Hoping it's just a bad day. If you have sensitive ears, I apologise, I sometimes swear a bit too much.

Interesting to hear about the fusion, and the use of synthetic bone, shame they won't do it first, if the success of it working is significantly higher and the risk of two really major operations. Surely that's not cost effective? Well, clearly your surgeon feels the same. Good he has common sense, but really not good for you, caught in the middle, in pain and with poor mobility while they play out their games. Hope it gets sorted soon.

In the meantime take a seat and try and keep up

berrie it was so scary, you know like those films, when you think 'this can't be happening to me, it doesn't really happen to people' as the mud the front tyres were in got wetter and wetter, DH and I got more and more stressed, and I sort of slunk into my coat hoping somehow it would have sorted itself out when i poked my head out again Then, after some panic, I sort of figured that as long as we didn't career down the sharp incline/cliff type edge, and made sure we forced ourselves backwards, collateral damage would result in, worse case scenario, the decision we are struggling with re getting a new car would be made for us. Unfortunately, due to my superb driving, not a scratch (that was not already there) . The thing is though, we were turning where another car was parked just up from us, and there were houses around, with really difficult to get into tiny awkwardly positioned drives. I can't possibly see how these people could bear to navigate their vehicles in such perils on a daily basis, and the weather sometimes get's worse than that. It's not even like they were all 4x4s. The car that we were near was a little fiesta or something!

I do feel very fortunate to live near the sea at times like this. I am going a little bit stir crazy with no fixed routine, and have spent a lot of time in bed, so trying to get up and out and doing something, and the sea clears my mind.

Pavlov you seem to be having a bit of a week.

Pav, sounds as if you are ready to get started on those cupboards in short bursts? The scary thing really resonates with me. That feeling of hoping if you don't look it will disappear and turn out to be a mistake. Maybe the residents of that road all have those circular turning things? Actually I highly doubt it. I know the sort of place you mean.

Elf, it does sound crazy to deny you the more statistically successful product an only let you have it after more! highly damaging surgery . Your surgeon sounds very confident about it being helpful. How do you lobby for it? My mp, as I mentioned has been bloody helpful.

Hope you manage to have a fairly comfortable night Pav and anyone else suffering today.

I don't have a blue badge - I think I probably can walk too well to get one, also I don't drive as I don't really need to in London. I passed my driving test on a shit load of tramadol, ami and a few other things, but the morphine really messes with my peripheral vision and I struggle to even be in the car with DH driving as I think we're going to hit walls and things so it's a very good job that I don't.

Don't have a freedom pass either. I'm probably bonkers, but I suppose I always think other people are worse and that people will think up trying to con them. The morphine makes it possible for me to cover up the pain and do things like go to the supermarket.

My mother has severe MS, so I probably measure mine up against her all the time. We used to look a right pair out shopping as we both limp with the left leg, but she is now in a scooter and on sticks.

Pavlov - did they not suggest a fusion to you? With oedema of the endplates, osteophytes, facet joint damage and the rest, I'd have thought you would have been offered that. FWIW, although my surgeon told me he could only do things for leg pain, that was when you are talking about herniated discs. The modic changes in the vertebrae (oedema in the endplates etc) are a significant source of pain and fusion is the usual treatment and can be very successful.

Have they offered you the antibiotic trial?

At any rate I hope they've given you some nice strong painkillers for post-op and that you get a really good result.

I'm majorly annoyed over the stupidity of the CCG with the BMP. If it was 65% v 60%, then fair enough, but 99.9% v 60% should be a no-brainer in terms of cost-effectiveness.

My surgeon did say it would be a fight to get it. I used to work in politics, was a councillor and know my local MP very well, so I could go down the route. My GP is doing what he can - we have an arrangement where I just email him rather than going through the faff of getting appointments, so that speeds things up a bit and he has really fought on my behalf for things in the past.

Originally this time round, I was sent to a muscular skeletal clinic as it was apparently the quickest way to get a new MRI. Saw some complete idiot of a physio, who said that there was nothing wrong with me and despite my previous surgery, my having had a baby since and acknowledging that I have foot drop (he did the worst neuro exam I've ever seen) he would order a new MRI. I have never come so close to thumping someone.

Then sent me a letter to say that all my issues with pain were psychological and I needed to perhaps look into some kind of help to deal with it and stop taking painkillers. I actually bawled down the phone to my GP who just booked me an MRI direct.

Surgeon went nuts when he found out and wrote to the physio's boss enclosing some 'educational literature'!

elf my pain management team are quite behind the times really. I had a conversation about the antibiotic trial, when the PM doc had a chat with surgeon pre injection as he wanted to make sure no infection as apparently steroids can make it worse, or something. He gave me a pile of bullshit about there being no real evidence it works for anything other than a clear case of infection. Even though my understanding is that it's bloody difficult to have a 'clear case' of infection until it's bloody well too late, and basically, No.

Fusion, it's been discussed, gone from first ever spinal assessment appointment where fusion was 'last resort' to it being the next step if discectomy didn't work, to not a good idea, to possible, to my most recent surgeon saying he doesn't want to go down this route right now, as the success rate is 60/40, and that's not of pain-free, but of reduced pain. He has said in his recommendation letter to my GP that fusion may be considered in the future, but that he feels the laminectomy will be more successful at this stage, followed by injections (presume into the facet joints) to manage the back pain.

To be honest. I absolutely will do anything else to help fix me, and will need to take a huge downward turn again, to consider fusion. Doesn't mean I won't, but I remember being in hospital, puking with cracking headache saying 'never going through this again'.

cold it's not been so bad. Busy, definitely upped my game and the really gentle recovery period is over. Bam! straight into family life again! But, it all keeps me on my toes, literally Do you know, I've gone right off alcohol?! we have beer, spirits from christmas, couple of bottles of wine, all the ingredients for me to have my favourite Manhattan cocktail, no need to get up for work the next day, and not one ounce of desire to drink any of it. So strange. Normally, the only thing stopping me wanting a Manhattan is the cost of replenishing the ingredients, as it's an expensive drink, but hope, even writing it down now, not tempted. I am so cross about that! I have had two glasses of wine since surgery, enjoyed the first glass, second was too much and even the first one was given to me rather than me thinking 'i fancy a glass of wine'

matilda oh yes, have been doing little bits this week. I promise not going mad, really small, one thing at a time, stopping before I feel tired etc. Tomorrow I am having a quiet non-productive day though I think, after our adventure today! I so should have taken a photo of the car wedged before we got it out

elf meant to say, before tramadol/codiene brain distracted me, all my pain management team are happy to do is to try to encourage me to 'not have emotional negativity' 'stay positive' 'keep going' and to trial their new drug Tapentadol! They've even stopped offering me CBT (because I refused it until they had done more to help the actual pain, not the 'coming to terms with' my pain). I should not be so chipper about it really, they frustrate me fully, but not much I can about it (except wield the letter from my current surgeon confirming facet joint degeneration and recommending injections and hope they let me have them this time).

re blue badge/travel concessions etc - pain and immobility is not competitive. It's not 'you are more disabled than me so I am not entitled to this, you are'. if you have pain and mobility problems, you are entitled to apply/be granted it, whether or not someone else is 'more disabled' than you. There are plenty of people more disabled than me, but I am still disabled and I do still need the help provided by a blue badge. If I were in London, I would take advantage of the freedom pass, because, I would not be able to drive in London very easily, I only manage now because everyone drives at 10 miles an hour and are so polite to each other [grin[

oh Pavlov what an adventure! Yes driving can be sore so don't do too much (especially in this weather- we are covered in snow here). My left leg and foot are still a bit strange - there have been pins and needles, strange buzzing, numb, etc and still not entirely normal 7 years in but its not sore which is the main thing!

Re fusion - I thought it was a bad move but consensus here seems to suggest otherwise - doesn't it leave you even less mobile? How do you all know so much? - I feel stupid and reduced to class clown in here (which is my way of dealing with things). I will try hard to be serious - there isn't a serious face lol

Hygienist called in sick so can't get my teeth cleaned till tomorrow - I was counting the days as am desperate here - done my best but they are bogging!

Hope you all have a better day and no slipping on snow - I might venture out later .. slowly!

Ally no snow here though I think we might be treated to some sleet later today. DH is skiing and the forecast was for non stop snow which pretty much precludes skiing so hoping it eases up. I don't feel very expert on backs in general, just my own! Collectively all of us have a vast body of knowledge including you. In fact you are very inspiring to those who may be feeling that progress is slow because you can attest with experience that healing can be very, very slow.

I absolutely agree with Pavlov about accepting the generous benefits available to the disabled. We have all had a lot of difficulty accessing most of these benefits. I see it that if the assessors agree I deserve them then I probably do. The day my BB came, though was very sad. It confirmed for the first time that an 'outside' person thought I was disabled. The fact that we have all had to spend so much time and effort getting benefits, scans, the correct medical advice...it goes on and on. Well, it's plain wrong and no doubt most other groups of disabled people are treated the same.

How will the BMP issue ever be resolved, Elf? Sounds like stalemate. Is paying for that aspect of the treatment allowed?

I was surprised my surgeon suggested the antibiotic trial (I see Mr Casey - who is president of the Assoc of British Spinal Surgeons and was the first spinal neuro-surgeon in the UK and the first to do artificial discs in the UK), but he was quite enthusiastic about it and said that the results had been very positive for a lot of people.

You take 1000mg/day of amoxicillin for 100 days - results should start to show after about 8 weeks. It's an easy one to do and I had no side-effects at all - I did about 80 days of the trial.

I'm a compliant patient so I think he felt I would be a good guinea-pig as well as falling into the small category of patients who can take it (the newspapers rather painted it as suitable for anyone with back pain whereas it's actually quite specific). It's designed to tackle infection that can't be positively diagnosed - ie if you get better then you probably had an infection.

I was sent for a SPECT Cat scan which is supposed to show infection as well as inflammation. It's rather a fun one to look at - they make you 3D and multi-coloured, but takes several hours of lying still and makes you radio-active for a couple of days. Apparently my knees are starting to look a bit dodgy but the rest of me is perfect .

Mr C is definitely in the 'fusion as last resort' camp - you can't go back and undo it, so that is very reassuring. If he wants to chop me up, then it's obviously severe enough to warrant it. He is very against artificial discs - says he spends a lot of time fusing people with failed ones, whereas 10 years ago he was 50/50 on them.

I will definitely report back on the results and the whole experience.

Pain Management - I've had such a mixed bag on this and FINALLY met someone decent just before xmas at the RNOH.

I've been very lucky that my father was a GP and doesn't believe in people suffering pain and when he was my doctor, we experimented a lot with different combinations of meds.

One of my criteria for choosing a GP is that they must be accepting of good analgesia being important. Two of the GPs at my practice will only prescribe morphine for a couple of weeks, whereas the one I see is happy for me to take it long term and also listens to my suggestions of things we can add in or try.

I was on the Input programme - and actually ran away (my husband made me go back!). They told me that I was a junkie, that you should never consent to spinal surgery and that my problems were due to my inability to accept my pain and to stop looking for medical solutions!

I got cross because all the others on the course with me, had far less issues in terms of reported pain levels and disability than I did (that was a surprise to me), but none of them had a job - I worked full time, and was a local councillor on top of that) and none of them took more than the odd paracetamol. I told them to get some good drugs and get going with life rather than being terrified of taking opiate based drugs in case they got addicted. I was in big trouble for suggesting that.

One med that I can really recommend for those with nerve pain is Lamotrigine. It's an anti-epileptic and has imo no side-effects at all other than a minor headache when you increase the dose, and doesn't interact with anything else. You do need to increase very, very slowly at the beginning as there is a risk of Steven-Johnson (and imo the increase schedule in the UK is far too fast). In around 20% of people it works wonders on nerve pain. It's also used as a mood-stabilizer and has the added benefit of really helping with any depressive symptoms which is a definite plus for anyone with chronic pain.