Back to Back Trouble. The Back Pain Support Thread.

[Matildathecat]

This is a support thread for people with back pain (that does not even cover the description of hell that back pain causes). It's for all types of back pain, for long term posters with chronic pain (including those on the upwards journey to recover), short term advice through tough acute episodes and all the in betweens.

We moan, winge, share successes, guide each other and hand hold through the maize of a million medical routes and options, treatments, investigations. We internet shop as a form of pain relief, drink wine, take strong painkillers, eat cake and we go through lots of heat packs!

We don't always have the answers but we do have a lot to say about it all

Here are the links to our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues
www.mumsnet.com/Talk/general_health/2023274-More-Terrible-Back-Stories
www.mumsnet.com/Talk/general_health/2049637-Back-Again-Back-Pain-Support-Thread?msgid=47419209#47419209

And some other useful links and info:

www.patient.co.uk/health/cauda-equina-syndrome-leaflet

We have done the hard work for you and learned about effective drug combining. Using NSAIDs, a stomach protector, paracetamol with or without codeine (it enhances the codeine), nerve pain meds such as gabapentin and/or amytriptiline can all be more effective than simply taking huge doses of opiates. Of course most people won't need all of this but for severe prolonged back injuries this is helpful to know.

Heat, gentle exercise, TENs, medication patches, diazepam and accupuncture, we've tried them all.

So if you are suffering come and join us, were a social lot.

Hi guys, was suggested on my thread I came over a joined you.

I've suffered from intermittent backpain since I was a kid. Fell down the stairs last oct and have has severe pain ever since resulting in loosing my job as I can't sit/stand for long I've been diagnosed with Scheuermann's disease and have a mild scoliosis but noones sure why I've do much pain as in theory I should be fine!!

I currently take paracetamol and tramadol with codine for breakthrough pain and manage ok salon gas I don't do too much. However just had a completely unplanned positive preg test so panicking slightly what happens next. I can't cope without the painkillers but don't want to risk the baby. And I'm not even sure if my back will stand up to a baby. We have a 3yo DD and she was a big baby with excess water so I was huge by the time I gave birth

Forgot to say I also suffer fro joint pain. Not every day and notin every joint or even the same joint. Pain clinic thinks it's from compensating for my back but othos ignored it (that said orthos also said there was nothing wrong with my spine I had to find out their diagnosis from the pain clinic!!)

Current pain meds don't really touch the joint pain but I don't like taking NSAIDs because they give me an upset stomach

Hello ladies, sorry you are both suffering. lex, did the surgeon say why he didn't want to operate? You sound very young to have consigned to chronic pain management. have you just started the gabapentin? I and others here do find it helpful with nerve pain so maybe you will get some more benefit from that soon. It does take a while to build up in your system and also to get through the side effects enough to increase the dose.

iccle, hello again! hope you are able to get along to your GP soon for a chat about your meds. Afaik your meds should be ok although you will get some people frowning at you. Until they have suffered the totL misery of back pain, let them frown. Hope you can get lots of rest. And help.

I'm sure others will be along later to welcome you both.

Sorry meant to say I am in the early stages of learning the Alexander Technique and finding it quite helpful and interesting. I'm getting nhs one to one classes but there are apps and books.

Hello! Thank you for replying and your advice. The surgeon just said it would probably cause more damage and he didn't want me to go through something as big as surgery.

Yes I have been on Gabapentin for 2weeks now and apart from scary side effects at the start, it has helped with the serious nerve pain I have.
Although starting to feel it's wearing off...? I am also sometimes taking ibuprofen too as back pain is still strong. I am quite young, 30yrs old which doctors etc are always so surprised about...I'm going to go back to pilates as was doing it for 2 years but my teacher moved away. Also am going to go swimming regularly...I am quite a fit woman and luckily have no weigh issues, so I'm a bit lazy with exercises!

Can I ask what is the Alexander technique?
X

Managed to see go this morning. She said I can't take anything but paracetamol?

OH is not on board at all with another baby I think part of it is he's depressed (not that he'll see gp) so now I don't know what to do. I can't force him to have another baby, but I know I cant have an abortion.

But then I also know there's no way I can manage I just paracetamol for 9months

Yes I had a pip assessment.

Will read the message you sent me. Thank you x

Iccle - Codeine is fine in pregnancy, just be careful before birth as it can depress the baby's breathing. I didn't realise I had a slipped disc during my second and possibly first. I had natural births too. Heat, baths, showers, support belts, support cushions in bed, on chairs and in the car will help. Crutches if it gets really bad or even a wheel chair. You need to discuss this with a physio to do what's right for you.

iccle GP bound to be cautious, so don't panic. Do you have a pain clinic you are under? Also worth asking to see your diabetic consultant or nurse for a review and ask them.

Failing that find a local friendly pharmacist for advice. The problem is with most meds that you can't ethically test pregnant women to see if drugs are safe so they will state use with caution.

lex what dose of gabapentin are you taking? It took me months to get up to 600x3/ day but others here have done it easily and gone higher, too. Do read through here for advice on drug combining. It's the way to go. Also antinflammatory drugs work best taken regularly as they build up. Then you also need Omeprazole or similar. It's a merry go round. Are you under a pain team? With so many long term meds at such a young age I hope you are getting the best possible advice.

This has been posted before but it's really helpful. Listen to the guided rest as you practise.

www.imogenragone.com/self-help/constructive-rest/

It's so hard to explain what Alexander Technique actually is and I'm only a beginner. But...I went along on the basis of giving anything a go and I'm loving it. The teacher has magic hands.Really extraordinary feeling as she has the lightest of touch. I thought it would be kind of Pilates like but no. It's more like a philosophy of being. Thinking each movement and activity through. Losing tension, making good decisions ie not reaching high to open a window, use a chair to stand on. But doing the rest sessions above is crucial and other than finding the discipline to actually do the rest it's not difficult. I've had three sessions and can have eight. I've asked to start going fortnightly so I can take it more slowly and get max benefit.

Will write a longer tramadol fuelled post later about my interesting lightbulb moment today, but for now.

You London lovelies, where are you based hospital wise? Has anyone had experience with National Hospital of Neurology and Neurosurgery? I know tadaa has! and have he recommendation at the top of my list of my second opinion. So far he is coming up tops, and so is the hospital in general for it outstanding, progressive attitude to surgery and other treatment.

Do you think I could ask for pain clinic there too? Daft I know, but really, its not like I would be having appointments weekly, they are minimum monthly and usually 3 monthly so not unrealistic to travel up for it. It seems that a specialist hospital has access to so much more in terms of diagnosis and not just 'I can't fix you surgically, not my problem now, go away', and more likely to pass on to other specialists such as pain clinic with better treatment options. I have some questions about the nature of my pain that I think can be answered better by someone who works in a progressive environment as they will be more prepared to explore diagnosis, such as endplate infection, arachnoiditis. I often wonder who people get diagnosis such as these when no one seems to explore them as a possibility.

I am ware that this is incredibly naive of eve and that actually these surgeons may be no different than those down here. But, it's worth a try. And the surgeon I am looking at has experience and interest in as well as spinal tumours, in degenerative spinal diagnosis and treamtnent.

Any other recommendations of hospitals to look at, or avoid, please tell me!

Hi to everyone, including new posters!

Thanks for posting that link, matilda. I really need to get back into the habit of lying down regularly in the day. Doing a fair bit of walking, which is good, but too much sitting & "pottering" aimlessly doing minor jobs. I know the lying down helps, & I've got plenty of time to do it - so no more excuses.

Shitloads of pain today - upper back hideous, & leg pain awful too - & the joy of the England match now! The boys are desperate to watch the whole thing, but it is a school night so we'll see.

Thanks Matilda. My gp does all my diabetic care as the local team are dire but I know the team at the hosp I'll go to for baby are amazing. I'm going to ring the pain clinic tomorrow see if they can fit me in ASAP

I'm sure I saw someone else mention queens square apart from Matilda. Charing Cross seems good so far, I'm happy as long as they keep their promise to fix me! - I was expecting a fight so I didn't have any questions about surgery planned and now I have loads.

I've been told by the surgeon friend of SIL Charing Cross is good and by my medical negligence lawyer friend who gets cases from there - very few cases compared to other hospitals. Charing cross is connected to imperial which is usual top for medical studies. All long waits I'm sure.

I'd be tempted to go private initially so it more relaxed and you get more time. Plus you will get seen quicker first time so you can get everything else kicked off quicker. It's hard to know who is good and whether experience is best or pioneering and new approaches best from younger surgeons.

There was another hospital who seemed good, had a multidisciplary team inc neurosurgeons. I think it was kings college hospital.

London is good, have you places to stay or people to visit anyway? It's great for kids once school age. Hammersmith is like proper London to me now, I'm so in the burbs. It's very exciting.

i'll PM you. Queens is where I am looking at. The care bothers me, but, realistically, as long as I am out in a couple of days and the surgeon is excellent I will suck that up. Were you happy with the surgical side of things, I know you had issues with the speed of dealing with it didn't you? Was that surgical? I hope it's not 'that one' of Matilda's, and you are instead referring to the 'fixer'

Good to hear about the pain clinic, maybe I won't go down that route then, I can have useless without travelling hundreds of miles but, i really like the notion that there can be more exploratory stuff to see what else might be happening instead of this 'you have something that can be fixed surgically, or else it's a malfunction which we can't fix' catchall I keep facing. If that is what is happening, then I will deal with it just fine, but, they cannot possibly say that while there is still going on that is visible on the MRI and not thoroughly researching that first.

Like, the pain clinic consultant showed me an MRI image where the nerves were close to the disc bulge but not touching and said 'you are lying nice and flat and see how the nerves are lovely and relaxed not touching the disc' or something like that, but, that's the problem with the MRI, it's not a standing MRI, and I am in the position that is the least painful which suggests the pressure is not there when I am that position, but when I sit, or stand, or bend. So they need to do a standing MRI and I would expect there would be a somewhat different result. Or some movement based x-ray that the consultant can be there for, to observe the movements as I move. Or a dye contrast to check the nerves properly, all sorts of things.

I have figured out what happened with pain clinic. The GP referred me back to neurosurgery for second opinion, the central referral unit (serco or some other idiotic cheap as chips outsourced company) messed it up by sending it straight back to local hospital (i'll you you that story later) for the neuro team to discuss my case in a weekly 'multidisciplinary team meeting'. Which, of course, includes the pain clinic! So! That explains why the consultant kept going on and on about surgery and accepting it won't happen, despite this being a pain management meeting not a neurosurgery one, and how Mr Arrogant would not make this decision if it was not the right one, wheeled out all the stats and tried his hardest to convince me that Mr Arrogant was making the right call (and he kept using his name, his full name not Mr Arrogant, but 'Rupert Arrogant' Because ! they discussed me at the weekly multidisciplinary meeting! And Mr Arrogant likely said something along the lines of 'i see you are dealing with Mrs Wontgoaway, I have written to tell her, I have seen her to tell her, and she keeps coming back! Have a work with her will you Mr Pain Man?' Brilliant, over to you, my job's done, so, whose next on the list?. And probably has not even looked at my newest MRI and x-ray, as that re-referral has pissed him off.

And so, as it just re-enforces my concerns that a second opinion will not be fairly reviewed at my local hospital as it won't ever get past Mr Arrogant to start with as he will wave his hand at the multidisciplinary meeting and go 'already made a decision, not revisiting it, next!'

Now just got to wade through the incompetent central referral system to access the choose and book route. They are blaming my GP for their incompetence. He is going to blame them. I will scream at someone soon enough Luckily, I made the call at work, so I had my professional work head on. It's probably why I now have a manager of the referral team dealing with my case and will personally ensure it gets to where it needs to be, instead of slamming the phone down on an angry patient if I had called from home with my emotional head on

Told you it would be long

pavlov, yes! it was me at Queen Square. Regretfully it was there that I had my grim encounter with Dr Pain in the Pain Clinic. But, my surgeon was lovely and he's referring me to another doc in the Pain Clinic. Tbh I'm not sure they have all that much else on offer but I've had several injections and a lidocaine infusion. tough is right, the nursing is ahem, patchy but the medics are really good. It is a world class centre for neurology so yes, I'd recommend a consultation. You can't see the Pain team privately, of that was a consideration. Waiting times in the pan clinic are also a joke. It's clearly overwhelmed.

Can you post the name of the doctor on fb? It would be interesting. Anyway, if you want a definitive answer about surgery it might be a very good place to look.

loon, try the lying down but lying on your bed doesn't count.

queen CX is next on my list. I like the sound of there being less negligence cases there than at others. I definitely like that it is linked with research/studies. I really don't mind being a guinnea pig if it means medically I get the best care available, and to be honest, there is such black holes around back pain and treatments available for chronic back pain conditions that I would be happy to contribute in some way to helping change that in the future.

I new something was negative at queens matilda, it was the pain clinic man. I shall get rid of that idea though. In terms of nursing, if I paid for a private wing, would the nursing care be different, different nurses etc? i.e. I had the NHS work, but the care was private, is that an option? Would that be stupid money? The options would be surgically, either fusion, or nothing. So, if I were to have surgery i would be in hospital would be 2-3 days I think, providing all goes well.

Sorry cross posted. Def request a London opinion. Dr Rupert and Dr Pain probably undertook training at the same Charm School. What a pair of wankers.

What really troubles me is that we have fought on and on. Had some understanding of the systems, been prepared to persevere and make a fuss. What about the many, many more people who don't have our background knowledge and bloodymindedness? They get left on the scrapheap. Sucking up medication and not living the life they should. It's bother tragic and infuriating.

We asked if I could be on the private ward but there were no beds available sadly. I think it was £500/day but frankly I might have dreamt that! From my days in the nhs I think you can request the private bed but can't book it if you aren't a PP. Worth checking that. Don't let us put you off. The wards are old and some of the nurses a it dodgy (I was there over the weekend which didn't help), but it was ok. What I wasn't prepared for was that neurosurgical wards have a lot of really sick people who have brain injuries etc so it was a bit of a shock as someone with 'back trouble'. The drugs help one to care less .

matilda I had that conversation with the referrals manager today and also a colleague. I have just waded through the incompetence of the referral system and got to a manager who has admitted they messed up, but initially the person I spoke to had no clue what she was doing, how to read the info in front of her. And, if I had read that letter they sent me, as it was written, I would never have known that I had a choice in my hospital, in my surgeon. I would have been, as you said, thrown on the scrap heap and, sadly and with a heavy heart dragged myself through the rest of my pain ridden life. I said to the manager that it's unfair they don't actively advertise, clearly and simply on their letters what the route is for accessing the choose and book system, that there is a choice, and how to access it, as the majority of people would never know to challenge.

The reasons for not giving me a choice were, in the same conversation but at different points:
most patients don't like choice
most patients prefer to go to their local hospital
there is no neurosurgery team outside of this local hospital within at least 60 miles, most patients don't like to travel far
We prefer to make the decision and give the patients the option to look at alternatives, most patients are happy with that.

so where is my choice in that?! and, most patients are 'happy' with that because they don't know there is an alternative!

matilda For the right surgeon, if the decision is a surgical one, I will morphine induced grin and bear the nursing care, will make sure DH stashes some sick bowls close to me and not leave my water out of my reach

hoping to buck the trend for injections not working /making things worse tomorrow. In at 7:45 gulp. si and facet joint injections. I had a dural tap (is that the phrase? She put the needle in too far, leaked fluid, headache from Hell) after epidural with dc1and swore nobody was ever putting a needle in my back again.What the he'll and I doing!??

Hello everyone