The Back Pain Emporium is Open For Business. Browsers Welcome. Thread 7

[MatildaTheCat]

For anyone experiencing back pain it can be a terrifying 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 , 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 and say hello

Previous thread for anyone interested

Te GP made the referral urgent, dh has already spoken to he secretary twice, she was very helpful yesterday, said she had been looking out for the referral - it hadn't arrived yet, but said that she was going to deal with it as soon as it arrives. That sounded hopeful, but still not sure how long it's going to be at this point. I guess if we don't hear anything in the next couple of days we will call again.

Def chase the referral.

Even though I was an existing patient of my neuro, it still took me 4 months to get an initial appointment last year.

I'd also be tempted to go with a neuro over an ortho but that is probably because I had a very bad experience with an ortho when my back first went.

Glad others add some alcohol into the mix - it really does help imo.

My MIL's face was a picture at xmas when I used a G&T to wash down a handful of drugs and take the taste of the morphine away!

Said she hadn't realised you could drink and take painkillers - I just said I considered all forms of booze as additional analgesics.

Matilda - yikes on the SR Tramadol. The worst I have done is forget I've taken my meds and taken them twice... not a great day!

I probably ought to turn into my grandmother and have one of those pill things where you fill them at the beginning of the week and so can't do that.

Marceline - just thinking of non-med things, could your DH try some acupuncture. When all else fails me, that can sometimes help a lot. Heat is my biggest thing though.

With painkillers, it does seem that you can mix a lot of things quite happily. I take tramadol, codeine and morphine all together as well as the other stuff. Amitriptyline is great and can really help even at very small doses, but can knock you out (more than morphine imo).

Actually I think alcohol works better than any drug sometimes. Shame it's not really practical during the daytime .

And heat is fabulous but I need to be lying on a steaming hot hotwaterbottle which again isn't practical for getting on with everyday life.

Ladies, I have a question.

I'm seeing the ortho team in my local hospital tomorrow morning. It's a regional hospital and doesn't do much in the way of neuro. They will have the results of my MRI. My GP has already called to tell me she got the report which shows a large extrusion at L5S1and nerve root compression.

Would it be reasonable to request a referral to a neuro in Dublin as opposed to an ortho? Either way I'll have to Dublin.

oh yeah and +1 on the alcohol

Elf, yes, we definitely will be calling again if we don't hear in the next couple of days. God I hope it's not as long as that.

The ortho surgeon seems good, really helped dh last year, although all he had in the end was an epidural cortisone injection, but it helped massively. The strange thing was when they were discussing surgery options he only suggested spinal fusion which sounds rather scary as opposed to discectomy. Not sure why...Did you have surgery elf?

Right, so clearly DH will be taking his evening drugs with a large side of brandy! Here's to a better night! I am beyond exhausted now.

schmeegle, if you have choices then do some research. Some ortho spinal surgeons will be expert at this kind of surgery but in the main you want a spinal neurosurgeon.

I say this with heavy heart but for the best possible reasons: be cautious, seek advice and listen. I saw a surgeon who is a consultant at a London neurosurgical unit. I did this privately. He did a very poor job, rushed and wrecked my back. I'm not saying don't have surgery, just try all options first. Many posters on here have got better without intervention or with injections on the way.Some have needed surgery and some of those have done really well. Just ask a lot of questions re risks and benefits and if you don't have Red Flags don't rush into anything.

Good luck.

marcelene really hope your night is better. All drugs to be taken, ok?

Re the fusion comment...that's very worrying. Can you indicate where you live? Spinal fusion is considered very risky and very much 'if all else fails' surgery as far as I have learned. I would most definitely want a neurosurgical opinion.

I am in the South East, DH saw an ortho surgeon at Wellesley hospital. He was apparently going to suggest discectomy until he saw the MRI and then seemed to suggest fusion in the future as the only alternative option. Don't know why. Obvs he will need a new MRI now and we clearly need to research all options before he rushes into anything. DH - who is feeling a little better - said he would send you his MRI picture if you want!

I'm sure it's an interesting MRI to see but I am not a surgeon nor anyone else on here afaik! However, from what I have been told from a top neurosurgeon fusion has dubious benefits and would rarely be a first option. I, happy to recommend my neurosurgeon in London and Elf may be happy to recommend her surgeon.

Just saying don't rush in to anything when in pain ( god, I know how hard this is and how you have to trust doctors sometimes).

Hope your night is better.x

Lol elf I often used to knock back my painkillers with booze - it makes us hard core

Ice works better for me when I am really bad but heat is nice and soothing for normal aches.

I had discectomy and wasn't offered fusion but I'm sure other people can advise you more on that as not sure which route is best for anyone or why although I did think fusion was only offered as a 2nd surgery if first didn't help or another needed later? You are in the right place for advice though

Give me your surgeon's details Matilda and I will run him over for you ... oh wait a minute just got a new car (white) and don't want to get blood on it sorry! My surgeon acted like he had saved my life and expected me to get up and have a dance - God syndrome for sure - prat!

Thanks for all the sound advice ladies. I'm so glad I found you all

At the hospital atm waiting to see the ortho team. Feeling very well-armed and confident that I know what to ask etc.

Thanks again and I hope you have all had as good a night sleep as possible!

good luck today schmeegle

marceline how is DH today. I would be very cautious about being told fusion is the only option. It may be true, depending on what the MRI says, there are definitely circumstances when this is the case, such as clear and severe instability of the spine. However, I would want the reasons for this explained in full and with reasons for not proceeding with a discectomy/laminectomy or other less invasive procedure given. Then, I personally would get a second opinion to be sure this is a decision I would be happy with. Fusion for back pain, as opposed to spinal instability, is controversial, and the odds are not always favourable. Your DH needs to explore every other option before doing this, as once done, it's done. I was told at the beginning of my surgical journey that fusion may be inevitable in the longer term, but as matilda has been told, this is end game, and other things need to be tried first, so I have had a discectomy, and now a laminectomy/decompression. Each time I have been told that this might not be successful and fusion may be required in the future. I am hopeful that I can avoid it, or hold off for a much longer time (until my children are bigger and less physically dependent on me).

But, back problems are so individual, as you will gather from here, not one of our problems are the same, although there are definite themes and we have all been given varying advice and guidance.

I wonder if the desire to fuse is based on ortho opinion rather than neuro opinion?

Hello ladies,

I've just stumbled onto this thread. Am currently in a lot of pain with lower back pain. It's the worst it's ever been :(

I have had lower back problems for years. Had some X-rays done a few years back which didn't seem to throw much light on the issue and was prescribed anti-inflammatories (which generally did the trick).

Had a scan last December (am in France so all the lingo is in French and I don't know how to say it in English!) - TDM Lombo-sacrée. The guy I spoke to rattled off the results in 'medicalese' that I would've struggled with in English never mind French - basically a chronic condition with a global disc protrusion at L5-S1 and sthg to so with roots S1 (think he meant the protrusion touches the roots causing the pain?). Also arthritis in the lombo-sacrée.

Saw my GP who said my spine was basically like the mast of a ship that was slowly sinking. He said there was not a lot to be done but has prescribed me physio to work on strengthening my core/back muscles. Don't start these until March 6th. So I am now in a lot of pain, have been taking the anti-inflams plus ozempramole (spelling?), max paracetamol and diclofenic gel. GP said gel was useless but I have some in stock so am using it just to make myself feel better! Also sitting with hot water bottle behind my back.

It's so painful and I feel 105 years old. Not much chance to rest as two kids under five.

Any suggestions what I can do/take? I thought if by Monday there is no improvement, I could go back and see GP and ask for stronger painkillers. From experience, it can sometimes take two weeks before seeing any signs of improvement.

Feeling down about it all :(

Welcome Emgee sorry to hear you are having such an awful time of it - no idea how you ladies with kids and jobs manage at all (I have neither now-got rid of the job you understand not the kids haha!)

Someone with more knowledge than me will be along shortly to help I'm sure - this place is great. There are definitely better drugs you can get which will help (some of them don't actually touch the pain but put you in a place where you don't care which can be a nice rest!). In my experience they work pretty fast (half an hour?) so no idea what your GP is thinking.

Hi everyone,DH managed about 3 hours of sleep on a sofa - still unable to lie down, but definitely an improvement on the previous night. He is pretty low as he feels he won't be able to return to normal life for maybe months and wondering what this will mean for his job. I'm still hoping that amitriptiline will kick in miraculously and he will be able to sleep and function!! How likely is that?

He has been told his referral has gone through and should have an appointment with the ortho within 2 weeks which is encouraging. We're hoping for another cortisone injection in the short term but looking at surgery in future and it's clear from listening to you all that he will need to research this properly.

Shmeagol, I hope things went well with your appointment today.

Emgee, hello and so sorry to hear you're having such a horrible time. The lovely people on here have a wealth of knowledge and experience and have been a huge help at a very scary time!

marceline I would suggest you take a look at the Equalities Act, as this may be considered a disability as it is something that has already plagued him, and is likely to continue for a while. I would suggest you ask for a copy of the report/letter to GP from his last surgeon outlining what he felt the problem was, and then with this new referral, ask for a letter outlining what he believes the problem to be. It may be that his employer will request an OH referral to determine if they consider your DH to be protected under the equalities Act in terms of this being a disability, but if your DH simply states that he believes he is covered by the EA, then he is covered until/unless his employer can demonstrate that this is a temporary condition and not in fact a disability. What this means is that, once your DH has cited the Act as potentially covering him, they cannot terminate his contract, within his probation period or otherwise as he is protected by statute law, even within the first 12 months of employment. If it turns out that he is not protected, it bides him some time to gather his health and mental ability to cope with what's next. Personally, i will be surprised if he is not covered, as whatever is going on isn't going to fix any time soon, and all he needs is for an OH assessment to determine that this situation is likely to affect his ability to perform 'normal daily tasks' (not his job, just general living) for 12 months or more. Chances are, with whatever is going on, this is the case, even if he is not debilitated to this level, he is likely going to have affects on his physical health for a long time yet.

NB, disability in terms of equalities act and employment law is not the same as considering mentally that you have a disability, and it doesn't mean that if he is covered he is not going to get better. it simply means that if he/someone has a health condition that is more long term that regularly getting colds or monday/friday-itis they are not discriminated against. I was covered by the EA much longer than I ever considered myself to actually be disabled. It's actually bloody great, as it has meant my (larger) employer has given me the time to recover from my condition as best as possible.

It also means that his employer will need to provide support to him returning to work when he is ready, such as looking how he works, does he need a different desk (if a desk job) or chair, can he be moved to another role temporally until he is in a better space physically, adjusted hours if he is not able to get up in the mornings, change of hours if he can't work his normal hours (temp or permanent, it can be for just a few months), disability leave if he needs time off for surgery (although, this doesn't have to be paid time off, some employers will pay for some/all of it, some will simply give the assurance of the job in place when he returns). There is government financial assistance if he works for a small company if they incur costs for adjustments in returning to work if covered by disability part of EA and their are external organisations to help ensure the organisation is doing and accessing everything they can to keep your DH employed (PLUSS is the local one to me, there are other similar organisations).

What it means is, it's worth your DH pushing to be covered by the EA for this kind of thing. It doesn't mean his employer can't ever fire him, but it does mean they have to demonstrate they have tried to keep him employed and evidence how they do this, to avoid being taken to a tribunal for Disability Discrimination.

WOW. long. Sorry, it's just something I am very keen to impress on people as so many people give up work because they get fired or because they don't realise how much support there is/should be to keep working with a disability.

But. he is only covered if he tells them he is protected or believes his condition is classed as a disability. As soon as he tells them this he may be covered, or at least they have to do an OH assessment to determine if he is/get his GP to provide a report/consultant to write a report. So, it's worth him/you reading up the EA now and then drafting an email saying he thinks he is covered. It's up to them, not him, to provide evidence that he is not covered if they wish to fire him.

(Sorry, and, not saying they will fire him. Some employers are actually really, really supportive of people who become poorly while working for them, even in the first few months, it's not like he is taking the piss, it's just absolutely worth him carefully and kindly, but cleary, marking his legal position once it's known. Then it may take some pressure off him to concentrate on recovery).

emgee hello and welcome. Definitely talk to your GP about better painkillers, that's not enough! Nerve painkillers take a while to kick in, but weak (or even strong if you need them) opiates don't take long, within ours to get the initial effects of pain relief, and takes you away from the pain.

If you have a trapped nerve, which it sounds like you might, what are the next steps for you? Just physio? That is great for improving core muscles, but it won't stop your nerve being trapped, and it won't help the pain. Might be worth asking about injections into the epidural space/sacroilliac area/facet joints depending on what is decided is best to help deal with the pain of a trapped nerve, along with nerve painkillers (which is possibly what you are talking about taking two weeks or so to kick in - it's true, but they are bloody good drugs for nerve pain if you can tolerate the side effects).

Equality Act replaced the old disability discrimination act. Read it with a fine tooth comb. I had a boss who was amazing at interpreting this to my benefit and my understanding of this has probably gone a good way to ensuring my employers support me, and has probably help me keep my job thus far. who knows about the future as I really have pushed it to the limits (but have also tried my damnedest to be a good employee when well enough)

the actual Equality Act it's long, i love reading this type of stuff though. Sad eh?

Pavlov, thank you so much for taking the time to share that information. We are worried as he has only been in the job since November and he works for a relatively small college, they will have to cover his classes etc and I worry they may not be willing or able to keep his position open if he has to be off for more than a few weeks.