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

PS - frosty Yes, people have got more thin and pretty but at the same time same-y looking (i.e. same make-up, similar clothes, dyed blonde hair, skinny skinny etc.). Oh and perfect teeth. That one really annoys me.

Tins, did you speak to the lawyers yet? You absolutely should be compensated for all this pain.

Have you raided the mini bar yet?

Tins glad you got a nice secret Santa present but fgs stop working. You are ill. When does annual leave start. Hopefully scan will sort diagnosis and you can get on with a plan of action.

Am I a bad British person if I admit enjoying all the foods in that photo you posted?

Tough am loving the sound of your DD, that made me snort with laughter.

Matilda Sadly no mini bar as only a Travelodge :( No real coffee either, which is more horrific coffee snob. I usually bring some with me but changed my mind about going home tonight as I'd already paid for the room. Plan is to go into the station near work tomorrow, meet colleague for cheese, GET REAL COFFEE, and then travel straight home. Don't want to go into the office for cheese because then it becomes a whole thing of if-you-can-get-in-why-aren't-you-staying etc.

I tried calling the lawyers back after they said they would take the case but they didn't get back to me. I will call again tomorrow and try and speak to them again. I agree, this is beginning to mount up in costs and will do so even more if I end up on long term sick leave and lose my salary, which I foresee if I can't get this fixed.

frosty Annual Leave from tomorrow afternoon until the 29th and I have 31st and 1st off too! I have, on the orders of my co-workers (about 8 people told me to go home today) set a generic out of office to forward everything indefinitely and I will just do some invisible behind the scenes support rather than my usual gatecrashing meetings and shouting at hassling people. You are not a bad British person. Some things the Germans are just better at. I am a bad DIL though as when I saw that pile after my initial OMG-how-much-is-that?! I asked DP whether he thought there were any Dominosterne in the pile. He then emailed MIL and asked for some in addition to what is already there. I feel very bad. For those who don't know, dominosterne are amazing marzipan, cake and apricot jam lusciousness covered in dark chocolate. They are very addictive. I have seen them on the Christmas Market in Birmingham before if anyone is near Birmingham and wants to try them.

I am looking forward to the scan, then a proper diagnosis and something to focus on.

PS - tough I was reading that thread earlier. Makes for depressing and frustrating reading. It's what I have found so difficult in all of this - I have a lot of friends who are nurses and I know they work incredible hours under a lot of pressure. But as a service user, when it is your health on the line, it is very difficult not to fall into the mindset of 'fuck everyone else I want to be treated perfectly and I want it to happen NOW!'

Tins, I cannot emphasise enough how much you should discuss this fully with the lawyers. Keep detailed records of all your costs and losses. Keep receipts for absolutely everything from heat patches, prescriptions, cleaners etc and keep all letters, reports and scans. I am almost three years in, have full knowledge that I will not recover (I'm sure you will) and the costs and losses are quite huge. You take care. Your health is actually more important than anything.

Tough, I came home really quite traumatised. Pav is lucky and going to a lovely new ward. I can't believe anyone can defend sloppy nursing care. The nurse who admitted me had a terrible cold and had snot dripping out of his nose...and not one of them knew how to take a blood pressure. What really? It makes me feel so old but we had such pride in our high standards of care. It was like they just had a list of tasks. 'I am doing your temp', 'I am dong meds'. Nobody ever came and said 'how are you? Do you need anything?' Or just chatted pleasantly.

frosty, you must be counting all of your lucky stars, one by one.

Dot anyone who might be facing hospital, I do think we were unlucky. I have a huge belief that workplaces build a culture of kindness/ indifference. I took my mil to A&E earlier this year and the staff were fantastically kind. All of them. I think if a workplace has a strong, positive leader it will foster a positive workforce. It's not easy but presumably most people enter nursing or medicine because they care for others?

Matilda That's an excellent point, thank you. I will start keeping a record. I have all of my GP not fit notes and the referral letters for the clinic and scan. I have been keeping a log of the errors in my care and somewhere have my x ray from Greece (unless I threw that away, but I have picture of the car etc. and my UK notes state fractured rib etc.). I didn't bother to claim anything from the insurance as they were so awful I didn't think it was worth the hassle - I only spent about £20 on medication in the week we were there. Food and drink I would have bought anyway.

I can get records of all the sick leave I have had to take and also am going to pay (and get receipt now!) for my doctors' notes, which will state I am guessing how many prescriptions I have had etc., late night trip to OOH and so on. I also have receipts for the chiropractic treatment £300 and it clearly states on my induction letter that I am there due to the car accident.

Then, of course I am getting into the more ambiguous territory of career damage - if I don't meet all my objectives then I will (quite fairly) lose any chance of a performance-related pay rise, but I can demonstrate that before the crash i was on target for that. You are right, it begins to mount up

Have been lying on my back with my knees bent up and laptop on my lap for a couple of hours and the pain has lessened, think I just needed a lie down :)

I am not listening to matilda and tough about the ward care in the Very Hospital I shall be having surgery in next month, and maybe even the same ward. I shall instead concentrate on thinking of curry fusion menu and pretending I am in Germany

I am taking note, and I will be sure to get the fuck on with going to a real toilet pdq post surgery. My care locally was crap too, but I won't go into detail of the awfulness of it, some of the nurses were fabulous, some were shitty as fuck. They are all overworked, but some are more able to manage than others, perhaps those are the ones new to the ward so not burnt out yet. But as a patient it makes little difference knowing why they are sometimes rude and uncaring, when as a poorly patient you just want to be looked after.

And I am gonna need to be given proper TLC as I am probably gonna be on my own for most of the time I am there.

I don't get a clicky button at the national do I? that was worth it's weight in gold after last surgery as I just got mashed for the whole time I was in. oramorph ain't gonna cut it is it? Maybe I shall discuss my absolute fear of being in pain post surgery, see if I can get a clicky button.

matilda I just read your post about going to a lovely new ward. I am not entirely convinced I am actually going there, as the paperwork doesn't say anything about going to that fancy building and seems to indicate the main hospital Mr S said I was having the surgery there but maybe he meant generally 'at the national'. Oh Dear

I think I shall tell the nurses that I have taken a shit, even if I haven't, just so they let me go home...

tough your DD sounds fab, glass she is home and on the mend.

tough oh don't worry about talking about the ward, I heard it all before I chose the National. The care is not the biggest concern for me, as lovely as it would be, as long as my surgical care is sorted, and my actual surgery is done by the best, I am tough enough to cope with the nurses. If I have a clicky button, I will be even happier as I will just press it every single time the green light comes on

last time, I kept getting told off for not pressing it 'pavlov the light is ON, you need to press it, keep pressing it as soon as the light is ON' and would keep coming over to me and pressing it if I was dozing obviously wanted me dopey so I stopped talking

Even my DH tells me to stop talking sometimes I talk a lot, and I talk fast. i used to do everything fast.

Is the clicky button the morphine drip? They told me to stop pushing mine because I was shaking so much!

One day to go fro me! We have a writing assessment and spelling test this morning No dvd's or words searches on the last day in our school!
We will make the bags - thanks for that idea - this afternoon though.
Tins Thinking...thinking...leglislation...shouting in meetings>
Have a great day everyone.

I didn't have a clicky button but had to beg for drugs which took hours (literally) to come even though I also had the worst migraine I have EVER had. Also no catheter as promised. All lies. I was totally traumatised for months ... years even. This surgery (private) has nurses all over me (one even cuddled me when I said my sister had died recently. This is what the NHS used to be like (previous op in 1986 was like that so wasn't expecting the total neglect I had with my back op in 2007).

Anyhoo - moving on and stopping horrifying those who have not yet experienced hospital (tip: take a comfy pillow cos NHS ain't, also have "put the water back within reach!" tatooed on your head cos they tell you to keep hydrated then keep moving it out of reach!). Get as many visitors to come in as possible as its the only tlc you will get plus they can give you water, etc.

Sorry I'm ranting again!

Anyhoo - had a real pity party yesterday with pain and not eating (but still feeling sick) so forcing some food down today and WILL be cheery when hubby gets home tonight as its so not fair to worry him so much. Please pray for me that I don't need any more tongue surgery cos its hell. The stitches snag on your teeth (on swallowing, yawning not to mention even attempting to eat) and cause earth shattering screaming which scares the living daylights out of hubby. And the drooling yuck! And the smell inside my rotting mouth ewwwww am struggling to brush teeth obviously and its getting really nasty in there

Sorry ladies I am pathetic. Am trying to toughen up honest. So sorry for baning on when some of you are having an even worse time!

Ally, OUCH!!!, that sound so horrid. Is it healing at all yet? Please god it is . Am putting a special thought aside for you because actually back pain can always be drugged away if it's dire enough. Your tongue is much harder to ignore. Can you tell us what you've had done? Not necessary, of course, I'm just interminably nosey. And I'm so sorry you lost your sister.((())).

MulledPav, I have to say I was very when told I would not be getting he clicky button but oromorph and paracetamol ( this is when I learned hat little gem of info). Anyway, I am happy to report that other than one occasion when they ran out of oromorph, I was not in pain. And I later realised that the pain was probably a bit worse than the first time because of the larger laminectomy. But still controllable. And I got sent home with oromorph, too. I very stupidly only took it about once then kept it as a 'last resort' option. That remained for over a year when I caved in and took a bit. OMG the relief. It is much weaker than proper morphine but really helps when things are very bad. So no bravery please.

Also, I have said a lot of bad stuff but tbh not all the staff were horrid, far from it. And I, like Tough was often observing from a professional stance. Things have changed and people are often critical of that. What I do observe, though, is that 'proper' nurses, ie qualified ones, seem to feel that personal care and bedpans etc are beneath them because they are so used to delegating this to HCAs. I lay on my bed and let the time float away. And texted a lot. The night after surgery I missed my BFFs 50th birthday party and that was very low, so you see, I was in a bad mood all in all.

Ally - so sorry about your tongue. Hoping very hard it gets better for you soon.

Matilda Interesting what you say about bed pans and proper nurses - I had a what looked like a 17 year old boy intern dead keen to help me with the bed pan until the sister sent him off to get sweet tea and took over. Felt a bit sorry as he obviously wanted to do 'real' care but never mind- he can have a go with one of the old fellows down the corridor.

So walking is going slowly but ok. The stairs didn't go so well - which is sub optimal as I live in a very narrow town house. But physio showed me how to do it with a crutch for security rather than actually leaning weight onto crutch. Really want to go home now. Dr rounds later today.

It is nasty Matilda and as you say hard to ignore. Well .. its was supposed to be nothing first time round - just removing an odd sore patch on my tongue but turned out to be something after all and right up to edges of removed bit so had to take lots more out so much sorer, more stitches, etc. Don't even want to type the word but if my dentist hadn't referred me it would have been full blown cancer quite quickly as grew between 1st consultant appt and 1st opp. Hopefully all gone now as really don't want to do this a third time but pain in face and jaw makes me wonder and scared although MRI showed nothing but the tongue thingy. Might not sound it but is getting a tad better but not going back to work this year. Or maybe ever lol. Thanks re Sis - been depressed ever since really (yes more drugs for that too lol).

Keep trying to cut back on drugs but its not a good idea really so taking them all today so hopefully zonked later yay! I was off for months with my back (before and after op) but have clearly forgotten how to deal! Am wuss now.

Ally It's bollicks it really is. I'm sorry I have no smarter words of comfort than this. Sorry too about you sister.