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

Grrrr at stupid input people Elf - why should we put up with pain? Does it make up better people? No it makes us chronically grumpy and miserable. I hate all this "its in your head" bollocks and the "you need to learn to live with the pain" and "you are too sensitive to pain" - none of that makes it any less painful. I tell people I am a junkie (jokingly) as I always have a handful of drugs on me and its how we survive!

Aww thanks Matilda you are so nice! Am also guessing you will be angry at above - if only people could swap with us for even a few hours that would shut them all up for ever

Elf, I must have cross posted with you. It was not my intention to ignore you. I have taken my son to Stanmore to use their sports centre which is fabulous. Its not really local, but they have special days there sometimes for disabled youngsters. It seems strange to have a world class disabled sports facility, but still has wards in huts, but at the same time I can see the difficulties of rebuilding. I was in hospital on a respiratory ward-when they were trying to upgrade the bathrooms - and the dust created despite plastic curtains, was very unhealthy - especially to respiratory patients! I agree about trying for a blue badge. Good luck with getting your funding for your BMP.
It must be very difficult to take life slowly with younger children Pavlov, but glad to hear you are planning a quiet day today. At least you were near civilisation, but I can understand the worry. I have an innate fear of drops over water so I would have been useless. I hope the leg pain settles. At least you got your coffee by the sea. There is something about sea air.
Ally I hope you get you teeth sorted, and your tongue has settled.
Berrie - I don't know. Our first home was a tiny flat with a rented garage and it was tricky when we moved to our house. However we had a roof space and the outside loo (for tools) - and enough garden for a garage. Some of our books are still in boxes in the roof! I know what you mean about stuff - we are hoping to move soon (no garage but it does have a small attached barn!) and I just cannot imagine having to move all our chaotic belongings. Life was so much less cluttered pre-kids! If you buy that house could you build a garage - or would a couple of sheds (one for the bikes/outdoor toys) suffice. Could you rent a garage locally ( but beware an offsite garage is not ideal for things you are going to need regularly- and might not have power - for DIY etc)
I will possibly pick your collective brains about planning a new kitchen (for bad backs) if we ever move house.

On knowing about fusions - my surgeon gives hand-outs and is firm on treatment being a joint venture not him telling patients what to do, so you are expected to consult Dr Google and learn about your condition!

From what I can gather the recovery from fusion is not easy - especially the first 3 months, and you won't see full results for 18 months. You have to be very careful about bending, twisting and carrying anything heavy (half-full kettle max for first few months).

You also have to not sit or stand too long, and walk at least 2 miles a day plus lots of physio.

Depending on how good a candidate you are, you should get improvement. I fall into the 'best chance' category and have an 80% chance of improvement. There is always the risk of it being worse or no change.

As I have no disc left, the bones are rubbing together and causing micro-fractures and swelling which causes pain, and the lack of disc has caused collapse which has really trapped the nerves to my left leg. So, stopping the bones rubbing, and increasing the height to untrap the nerves should theoretically have a really good effect.

The long term danger is that other levels will go.

With an anterior fusion, there is no major hardware - they just hammer in a cage and screw it into the vertebrae on either side, there's no big screws or bars.

There will be reduced movement at that level, but I can't twist at the waist anymore anyway!

I think a big reason that surgeons are anti fusion is because of the high rates of failure - around 40% of fusions don't take and require further surgery. The more surgery you have, the lower the chance of a positive outcome.

However, most surgeons don't seem to have access to BMP - the synthetic bone my surgeon insists on using - which has a 99.9% success rate so far. It's not something that is routinely used yet - probably because it's so expensive and hard to get funding for.

The NHS is wonderful in many ways but extremely crap for chronic conditions and so much depends on the area you live in and the hospital and surgeon you get.

I'm terrified of moving out of London as I do have good access to specialist centres here. They supposedly have the thing where you can request to go to any hospital you like in the UK, but I don't trust it!

Thanks maggiso - the sports centre for kids there is fantastic, and I believe there is a new scoliosis unit for children. Princess Eugenie was treated there before it opened.

It is quite hilarious how primitive it is - for those who have never had the pleasure... here are some pictures of a World Centre of Excellence!

Image 2 is of the main spinal ward, and the last one is the corridor to the theatres. The walls are made of corrugated plastic and is absolutely freezing - the slope is a good 30 degrees and I recall begging the lovely 7ft tall Rastafarian porter not to let go of my bed on the way down (there's a mini tractor to bring you back up). He just laughed and said his legs were long enough to run and catch me before the bottom .

Elf, it's always nice to hear about a sensible surgeon . I have an expert witness (legal case) who is a top neurosurgeon and I'm always interested in his views. Unfortunately like all medical science issues, views and preferences can change very quickly. He sounds a good chap. The surgery does indeed sound a big commitment for you but it sounds as if you have little choice.

My Pain Management course was a much more gentle affair. Lots of mindfulness and practical tips for living with pain. Nobody was working though several were retired. Everyone was in very significant pain. I was very disturbed by how little most knew about their own conditions and most had no idea what their drugs were actually doing. I love gabapentin for nerve pain. Another anti epileptic. It's good to find drugs that work. Sadly opiates don't seem very effective at treating chronic pain but there are few no alternatives. I think a lot of Pain Doctors feel impotent when none of ther interventions work and start to give the problem back to the patient. My experiences have been quite poor. I'm seeing a new chap at Queen Square in March to discuss options but I don't hold out much hope. I know I don't want any more needles stuck into me. After that I will manage with my nice GP. She will let me have anything, it's me that tends to be cautious and mean. I still feel 'naughty' when I resort to oromorph which is a) very weak and b) very effective.

OMG just saw the picture. Looks as it it should be condemned! I was treated at Tadworth Court as a child which was the country branch of GOS. It was very similar but I believe long gone. Serious investment needed there.

I feel bad that I no longer bother with a measuring spoon for the oramorph - I just take the appropriate swig from the bottle!

Fortunately opiates agree with me - a lot of the time they don't take the pain away, but they stop me caring quite so much!

I tried Neurontin a long time ago and it didn't do anything for me, but they're adding it in to the mix when I have the op, so maybe it will help this time.

The one I feel naughty about is that whenever I have to go into hospital for anything (having my DD for one), I take two sets of drugs - one to hand over and another secret stash in case they forget to give me any or lose them. Very bad of me I know, but having been left once for 12 hours with an offer of nothing more than a paracetamol because there was no doctor around to sign off on my having MY OWN meds I won't risk it again.

I agree that pain specialists are often left with few options and the balancing act between pain free and "doped up to the eyeballs and unable to function" can be a really tricky one.

I tried switching to Temgesic before Xmas when the morphine wasn't cutting it and that was a hideous experience. After 5 days I took myself off it. Fortunately I saw the hospital PM team a few days later - they were horrified by my being on that, and their suggestion was to avoid Fentanyl patches as I'd have no control for days if they weren't good but to try adding Tramadol back in with the morphine, lamotrigine and oramorph. It's working pretty well at the moment and I'm not getting through the whole half litre of oramorph every month now.

Can I ask which PM course you went on? Sounds nicer than mine!

Also do you know who you are seeing at QS, I've seen a number of people there (as has my mother) and some have been quite good - or at least I have come out crying with frustration!

Thanks elf - now I know a bit about fusion but I really hope I never need it. Glad to hear you are on the good side of the stats (fingers crossed!).

Gosh you are on a lot of drugs (and Matilda too) - I know where to come for advice on that too. I am hoping to come off a few things now I don't have the stress of working in that horrible place (the anti-d's and maybe the HRT patches and the amytriptilene which was for migraines which I hardly get now) but the pain meds are here to stay although swapping co-codamol for my new pal tramadol which had less side-effects (constipation). Actually in quite a good place at the minute and after tomorrow will have clean teeth again - horrible how quick they got to be minging!

Ally I had similar problems keeping my teeth clean after my sinus op, despite the saline washes etc. Hope hygienist is better and back at work for you tomorrow.
The burns unit my son (as a toddler - grabbed a cup of tea at a wedding - too quickly for me to prevent- only turned me pink - gave him 3rd degree scalds) was treated in in Bristol was similar to your pictures Elf, but they had covers over most of the walk ways. Still freezing and it was a dozen years ago. That all looks rather windswept.
There is pain that can be almost ignored (with day to day changes, pacing, mild analgesics and warmth) and there is PAIN that most certainly cannot - well IMHE- and both types and everything in between can be back related. Its hard for pain free people to understand that. I have had an initial PM consultation, but PM course was not mentioned - however I attended one for another condition (CFS/ME/ POTS) a few years back at the same hospital. The most helpful part was someone else (an OT) acknowledging my symptoms and helping me to pace properly. You get so used to being treated as a malingering fraud with invisible conditions that are poorly understood or difficult to treat. In the group therapy (mindfulness) it was clear we were a very mixed bunch- but all very much wanting to improve. The input programme would upset me (and spoil that lovely OTs hard work) greatly!
Hope the new chap at Queens square is helpful Matilda.
Can I ask the people knowledgeable about inflammatory back conditions such as AS what sort of exercise is helpful? My lower back has very little movement (I have flexible hips) but any exercise that tries to get that moving (such as cat and dog poses) makes everything worse. I do Pilates but tend to miss the painful; stuff I know will leave me unable to walk away) As I don't know what exactly is causing my longstanding back trouble ( I suspect both injury possible inflammatory as I have tick lots of boxes for inflammatory) I don't know what not to do IYSWIM.

The only exercises that I am allowed to do bar walking are core abdominals. They're a bugger to learn how to do - physio put me on an ultrasound machine to learn - but they did help massively.

I sleep with a heat pad always and I have a heated lumbar cushion for when I'm sitting (also bought a non-hoist requiring sofa last time we replaced - was really hard to find one but made a huge difference in getting up and down. When we visit family, I have to be hauled out of theirs - luckily I'm on the skinny side or they'd all have ruptured discs as well!)

Have you tried acupuncture? It's brilliant on spasm.

I really liked diclofenac, and it was very effective, but my GP took it away (only drug he has ever taken away) as there is some change about to come in over it, and also long-term is a bad idea. I do have a small emergency stash (does anyone else have one of those...)

Oh crumbs, the malingering... I get public transport a lot and I hate it when the only seat I can get is one of the priority ones. Then a load of grannies get on and give me filthy looks till I get up - frankly they can stand far better than I can. If DH is there, he point blank says that I'm disabled and can't but I'm useless at doing it myself. I am glad that London Transport does have a thing saying that people should realise that not all disabilities are visible which is something.

This morning I'd had to stand for 20 minutes and finally got a seat just when I was about to start crying. I'd literally just got the top back on the oramorph and this woman and her elderly mother got on and she had a massive go at me because I didn't get up immediately. There was a seat for her mother, but she wanted mine for herself. I was too miserable to want a fight and only had another 10 minutes to go.

I'm considering getting a stick for post op so that I can 'look properly disabled' - I sometimes wonder if I should get one now. Is that totally ridiculous?

My poor mother had a terrible time in the early stages of MS, people used to think she was drunk .

allypally - the best med I've found for migraines is zomig - v effective and doesn't make you zonked the way ami does.

Having a really low day, lots of tears. SI pain come back with avengance and have taken a lot of oramorph. Maybe too much. Just can't get the pain to go away in any position. Added to this my mum isn't well. Having lots of tests and it doesn't look good. I am the only one she has so it's all down to me to look after her. It's all getting too much

Sorry it's such a crap day, msdj. Have you got any diazepam? Sometimes that sorts me out if all else has failed. And sorry about your mum. Hope the tests bring better news than you expect. What kind of care does she need? If you aren't able to do everything you must accept outside help. My FIL has a carer at least once a day which has improved things for us all a lot.

Have been so sore all day but can report that a drop of oromorph and usual meds plus a couple of weak G&Ts have eased the situation.

I do have some diazepam but laying on a hot electric blanket and a good dose of oramorph finally hit the spot

Mum doesn't need any care yet. She can't drive so I have to take her everywhere and she obviously needs my support for her hospital appts. It's just a lot to take in. Especially with me being in pain sitting in on the appts etc. mentally and physically. There isn't anyone else to help out unfortunately but hopefully it won't be as bad as the doctors have first said

Hope you manage to get a comfortable night

Oh emergency stash - yes I always keep some of everything back just in case.

Like the idea of taking some spare into hospital too - normally I do what I am told but now I am a seasoned junky don't fancy waiting hours for drugs when I have my own.

And no elf I too have thought about the stick - people would be more inclined to believe us re pain, etc but I can't bring myself to do it so far. Re Zomig - it made me very sick - Imigran injections were my saviour till I had a stroke so now only co-codamol which do nothing for the pain but make me not care.

msdj sorry you are in so much pain - my neck kept me awake last night (after the 1.39am call from the care home) so might have to go to gp re this. No doubt its "all in my head". My Mum is also in hospital getting tests and I am wondering how to get there although they say not to bother (she is a bit of a Munchausens but at 86 you never know). Probably not a heart attack (same as before and before and .... ) but I'll feel guilty if it really is. Its too much for me too and like you I am it for her sadly as she doesn't remember me (or much like me these days).

elf (and everyone else who might not have seen it) there is a really good guess blog post on MN this week about 'performing my disability', which probably encapsulates some of what people think here, and some of the comments show a few people who take their sticks/crutches/walking aids with them not just for mobility support but also as a way of showing others that they are disabled. I know I do. If I don't take my crutch to work on a good day for example, when I might try to get the bus (only 10 mins, but v busy and standing room only most of the time) I won't get a seat if I don't take my stick, as people just think I am taking my time, not that I have a disability. If I stand on the bus, there is no way I can make it to work, unless I get the wheelchair space where I can stand and wedge myself into the corner. If I have my stick, there is always someone who gets up (although I make sure they don't actually need it themselves). Same with things like crossing the road - the crutch means I don't get people shouting 'hurry the fuck up' or 'are you pissed?' as I hobble slowly across the road. If I have the crutch people give me a sympathetic smile and let me go (although it seems in London, crutch/stick users who are not elderly get a rough time too). So, I am absolutely an advocate of using the tools we need to let people know what we need from them. Get a stick NOW, don't wait til surgery. There are no prizes for being stoic and soldiering on.

oh and re hospital meds, I was told by a very wise lady matilda to keep a stash back in case they take mine away, which I did. They didn't take mine, but did tell me to put it in my locker (which I didn't do). They gave me what I needed themselves from their own stock, they had my normal meds written down. However, there was a woman there who needed insulin and they locked it away and gave it to her at specific times, and injected her, which distressed her as she always injected herself and obviously knew when to take it but they wouldn't let her access it.

I have an emergency stash. My GP actually told me to have an emergency 'go to' box and gave me diazepam to put in it, when I didn't need it there and then. elf I used to take diclofenac, which worked really well for me but was stopped, something to do with increasing the risk of heart problems (or other health condition, can't remember) in later life, and was switched to naproxen, but it seems that this has the same risk anyway. But, whatever the reason, most GPs are changing/have changed to naproxen or other alternatives.

msdj so sorry things are not great for you right now. Sorry to hear about your mum, hope she gets better news than you are anticipating. Glad the heat and oramorph kicked in, positive vibes for today.

I've got little not very little stashes of drugs all over the place. I've often wondered if I could bargain with a burglar if push came to shove .

Yes, yes to stick. I use a walking pole from any outdoorsy shop. It has a spring which is very shock absorbing and good for leaning on in queues etc. it is necessary because I'm wobbly due to nerve damage though don't need it indoors etc. I hated looking drunk especially in the morning.

ally hope your mum is ok. My ILs are a similar age. The eighties are not a kind decade.. My FIL has infuriated the whole family by recommending driving this week after many months of safety for the world at large not. He was, even when much younger and fitter, quite the worst driver I've ever met. And sadly he's got medical clearance.

Ok, I should get up. I want a heat pad that stays hot all night. Yesterday I remembered my lidocaine patches so applies one with a heat patch neatly on top.

I'm feeling

the urge

to fill the last few posts

with Matilda nonsense

And begin...

A lovely, shiny new thread

See you there...

New Thread