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

Hope all goes well frosty. The only thing I would add to your list is tissues, as I am sneazy. Also I like to have wet wipes to keep hands clean, as the hand gel tastes bitter., so best wiped off before meals. A charger for your phone and any other mobile devices. A dressing gown or loose sleeved cardigan ( to fit over any lines in arms) useful if children may visit although dd will be too small to be concerned.

Pink hope you have a restful few days off.

sorry if I have missed you frosty but just popped on to say Good Luck today, tomorrow and the rest of this week, fingers crossed for a simple, easy surgery and speedy recovery. We will be here ready to hold hands when you need us xx (MNHQ don't read the holding hands bit, I didn't say that )

Will read and post in a bit, you have all been very bloody chatty since I last posted

I love the tip about sweets for the nurses, gonna steal that one myself.

tough I pm'd you last week for a spot of advice about patches. I was due to start fentanyl patches today but had a massive panic.mim now going to discuss with GP later in the week. Just not quite ready for a drug that is labelled as 'for chronic, severe, intractable pain and end of life care'. I'm going to ask for lidocaine patches and reconsider the narcotics in the new year. Very scary.xx

Frosty, waving at you and hoping you are comfortable. It will be very interesting to hear about German hospitals. I bet they are efficient!xx

Jeez tough hope dd2 is all right- have they operated yet.

My roomate is a Russian lady who has been suffering disc prolapse related pain since 2005. The physio has just been to show me how to get out if bed after operation. But explained I might not get out of bed first day and will either have a catheter or bed pan. Bit gutted I'm not going on the residential rehab. 4 weeks in the forest sounds quite nice. But no way I'm leaving DD that long.. I can do rehab at home with a physio. Frankly quite scared. But managing to hold it together as Russian lady crying a lot.

Matilda that does sound scary and upsetting. I'm sorry you have to think about these things

tough hope DD is ok. I am guessing she is having her appendix out? I had mine out at 12. Hope she gets looked after as well as possible, and it's not too much stress for you

yes tinsel you are correct - swallowing tablets not easy but I'm doing my best and quite woozy now am taking full doses of para and trama which is good .. also have a good mouthwash the hospital gave me - doesn't hurt as much as the one I bought last time

thanks for all the sympathy ladies - very much appreciated

tough Hope your DD gets better soon and they operate sharpish.

frosty Four weeks in the forest sounds very nice! Deeply envious of German heathcare! Glad you have settled in alright. Rehab at home with a physio may be actually better as you will get one on one care for a longer time? I imagine in the clinic it is in a small group setting.

Matilda that is scary. I hope you get some reassurance from the GP. They went to great pains to tell me when they prescribed amytrip. that is it usually meant to be for stronger doses and I shouldn't worry myself too much about the information in the packet.

ally Glad the Tramadol are working for you :)

Loon Hope your cold is improving!

pink Please take care of yourself, enjoy your few days off.

Today has been very painful. I lost my temper last night and cleaned all the bathrooms (we have 4 toilets - it's the most ill-designed house ever, I promise it's not actually a very big house!) in a fit of rage. Including picking up the shower that DP is meant to be installing in the bathroom and hurling it down the landing. I just wanted something to break unfortunately that turns out to have been me Getting very fed up of this. Been at work today and am completely done in. Could barely get up this morning. Working from home tomorrow and Weds, then working away at Head Office Thursday and Friday, followed by the works Christmas do. I don't have an outfit. Tempted to just turn up in jeans as people do go straight from work, although they usually get changed in the toilets first.

The Tramadol doesn't work as much as it used to. When I had the callback from the physiotherapist on Wednesday last week he asked incredulously, "Are you in pain right now?" I regret not being clearer and not saying YES because I don't want them to put me on something like morphine (has been offered) as I feel I'm treading a very fine line at the moment between pain relief and clear-headedness enabling quality of life.

Glad you have a comfortable mouthwash Ally. I hope your tongue starts to feel better soon.
Hope you are feeling settled in Frosty. Its normal to be scared - especially when you are unused to hospitals! Distraction is useful. The staff will expect that. I guess one room mate is OK as long as they are not crying all the time. I hope she cheers up soon, poor love. It can be lonely all on your own. I spent a couple of days in a small respiratory ward (after being let out of ICU) with an elderly German lady that got very lonely and disorientated at night (part of her illness) who discovered I could speak a little german so she would come and sit on my bed and talk half the night! She had an extension pipe on her O2 supply to encourage walking around!! But the others were lovely if very ill. I had imagined wards only existed in the UK. The idea of a 4 weeks recovery in the forest sounds very appealing,(the german system seems very well set up) but at home you will comforts as well as DD and family. We used to have convalescent homes in the UK 40 years ago when my Gran had surgery. Hope you have everything you need. Good you have internet access! Best wishes.
Matilda hope the GP is helpful, and you feel comfortable with whatever pain relief you decide on.
Tough I hope dd recovers quickly from surgery ( I assume surgery is the answer- had mine out at age 2). I hope the hospital understand her AS. Ds (who has LF ASD) was put in a single room (isolation room) and had a lovely nurse with family experience of ASD when he needed emergency surgery - (at RFH), which was a lot better than I expected. I stayed with him - had to as he is a runner/wanderer, and was very frightened by the strangeness - and DH was away. He got back in time to collect us! How are you? Are you staying with dd or can she manage on her own? Thinking of you and dd.

I am waving at everyone and wishing you all well. What a lot going on. Tough do hope dd is ok. I like the sound of her assertiveness so long as it is safe for her. We can all be too bloody passive with HCP.

I am trying to work out the correct dose if I did decide to start on patches. I am a tiny bit afraid that my GP might have made a mistake although I'm not sure. I just think that 150mg fentanyl patch sounds like a huge dose. I need to discuss with a pharmacist. In the meantime I will ask to try lidocaine patches which sound beautifully tame by comparison.

Tins, please don't go mad this week. It sounds very full on. Can you work from home at all and do what you are able? Your physio sounds like a piece of work tbh. Just to clarify that during the course of my back problems I've had a LOT of physio, both nhs and private. All have asked about analgesia, one or two have made gentle recommendations ( I was very anti amytriptiline for some reason). Not one has offered advice or direction on doses or stopping meds. It simply isn't part of their remit. he is out of line.

Ally I feel so bad for your sore tongue. Even a little spot or burn is so painful. Keep dosing up until it heals. I know the skin in our mouths heals very fast, I hope tongues are the same.

Frosty hope you are keeping occupied. Sitting in hospital so long preop sounds a bit ott. I was admitted a couple of hours before, though had been to a very thorough pre op clinic for full bloods etc. do you know where you are on the list? The person I was very reassured by both times was the anaesthetist. They were both lovely and also advised on drug reduction post op though that never actually happened. We will all be thinking of you and in a few days you will be so glad it's all over. A few weeks and you will feel so much better.

Sorry if I've missed anyone. Magso!, hello! Hope you are ok, Berrie, too. Any further rat updates .

I felt so crap yesterday but so much better today. Thanks ladies for the support. It's very gratefully received.

Sorry, I forgot to mention pink , hello lovely, so glad you are able to do so much but still your employers aren't more kind to you. Enjoy your days off. I hope you get some time with your feet up. Remember, you are one of our success stories. Just a few months ago you came here in a total spin and now back and functioning in the Real World.

Glad you are having a better day Matilda.

Matilda so glad you are having better day.

TINS wow. I eat chocolate when in a rage. Not recently though as can't get to fridge. Cleaning loo sounds more productive but pls don't hurt yourself. The anesthetic bloke has been and was brilliant. Really calming. And he's had a successful laminectomy himself so somehow that made me feel better

I'm operation number 4 tomorrow afternoon.

frosty, out of interest, if you remember tomorrow would you ask how long the actual operation took? Shame you have to wait, you can always come on here for some company. Start up a thoroughly silly AIBU thread?!

Tins, oh The Rage. I get that too sometimes. I'm not very nice when I've got The Rage.myesterday a friend was describing throwing all the fruit from her fruitbowl at her DH over some misdemeanour. Unfortunately she dislodged her wedding and engagement rings. She didn't find the engagement ring until five years later when they had a new kitchen. The ring had got right under a unit somehow. Now that's quite annoying...

Matilda Hope the medication discussions go well and pleased you are having a better day :)

Yes, this week is full on, but then I have a whole week off (and my magical MRI scan!). I will work from home tomorrow and Wednesday. Possibly actually take one of those off. I will see how I feel. I haven't decided yet whether to travel down on Wednesday night or Thursday morning. It's the choice of an uncomfortable overnight stay and a later start on Thursday or the 0630 train, so a 0545 start and a very long day.

frosty Yes, I think I was actually quite stupid as it really hurts :( Your anaesthetic bloke sounds great. Operation 4 sounds like a good omen - they will be warmed up but not tired out

Just came back from dropping excess presents at the local children's ward - was a MN suggestion as I wanted to make sure they went somewhere useful/they were genuinely needed. It was so upsetting - everyone locally has a lot of bad things to say about the hospital but it really says something for the local Trust's priorities that all the adult beds have TVs (pay per view so they make money) and until very recently the children's did not The nurse really proudly showed me the one X-Box and the TVs (whose aerials are broken) but at least play DVDs. They aren't allowed to decorate the rooms nicely as it's a PFI building - surely any Trust worth its salt would have found a way around this?! They had some cardboard cut-outs of frozen characters instead. The school room (a cupboard) had one PC that looked like it was running Windows 98 and when I was there it was broken. She was so proud of what they had managed to do so I kept saying how lovely it was but it broke my heart. Honestly, one of the rooms looked like the hospital in Greece - plain white metal beds and institution green walls :( I stumbled on it quite by chance but I will definitely take more things back, she said they were desperate for stuff and, as part of the conversation, I found out they usually buy things from their own pockets and stay late on Christmas Eve to wrap them up.

Matilda Sorry, x-posts. Yes, I tried a bit of silent screaming, only ended up actually screaming and DP came in thinking something (real!) was wrong. So he bore the full brunt of my fury (partially the Rage was due to all the things he hasn't done, that I can't physically do, but he's doing so much already that I can't be unreasonable and get cross) and it's all a bit tense here at the moment...

Tins wow that's awful. I guess the trust has no budget for that stuff and probably all the fundraiser money goes on medical equipment. Maybe a project for you when you are better? Hopefully parents bring in their own iPads etc but that's not always going to be the case. Well done you for doing that. I think it's a lovely thing to do.

Definitely. DP couldn't understand why they don't do fundraising but we live in the NE and very few people have spare money any more. I will mull it over during Christmas and work out the best way to help.

Matilda can you not start on BuTrans patches, I think they are the step before Fentanil (not sure 100%). Definitely speak to the pharmacist before you start anything though, I've found them to be very knowledgeable and helpful.

Good luck frosty, how exciting and obviously a bit nerve wracking. With any luck you'll be a new woman this time next week.

I'm sore and fed up this week. Must have a bug but I feel all out of sorts and a bit fluey, especially in the evenings, also I think lying perfectly still on an MRI plank for well over an hour has buggered me up too. Humph. Feel like I'm in limbo now, thought I had a proper diagnosis but now until the scan results are back in it's all question marks again. I hope I get something treatable as the result!

Tins - well done you and thanks for good omen

Matilda - bloke said today 2 hrs but dunno if that is 2 hours under or 2 hrs just operation

Ok. I've had diazepam and feel able to tell you about my melt down. When I get nervous, I get a dodgy tummy. But as I am in a 2 bed room, I was too shy to go and hobbled off on crutches to find a visitor loo. It was really fucking far. And I'd forgotten that I've only walked a few steps a day since mid Nov. Finally got there. No raised loo seat and couldn't bend down to go. Nurse who'd checked me in said - are you trying to escape? I explained what I was trying to do and she looked sympathetic and said - it's literally all a bit shit isn't it?

So I hobbled back to the ward every step more painful and realized I didn't know my room number. This is when I started to whimper like a crazy person until a nurse said - what's the matter? Are you in pain? And I sort of sobbed yeah, and I don't know WHERE MY ROOM Isssss.

They handled me into room and bed, I'm still crying. They ask why, I can't bear to say - I just really need a poo. So I say it's because I can't unpack- also true, also at that moment upsetting. I'm laughing now at my own stupidity but

Im still holding on until roomie is asleep.

Frosty, darling, I need to share something with you...Russian ladies poo, too. Go on, hobble out to the loo, put the tap on and have a poo. It might be some time before it happens again! Sorry you had a meltdown.mthe staff sound nice, though.

Losty, sorry you are crooked up again. I'm going to have more chats about the patches. I agree that fentanyl seems even more serious than BuTrans. Going to pm you.x

Oh frosty She will fall asleep eventually - she'll be drugged up to the eyeballs and sleepy. I had a conversation along these lines with a friend once and said I just hold on. She told me about her genius idea - shove loads of paper* down the loo to muffle the sound. Could you try that and also leave a tap running if you are worried about noise? I don't like to think of you in discomfort.

If you are bored and have wifi ARD (Das Erste) just did a 'review of the year' following Tagesschau that was really interesting and easy to follow (my very poor German managed it!) - if you go to the Tagesschau website you can usually watch stuff again.

*Not enough to block it!