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

How are the pads going Matilda ?

Sorry patches

Well, i do believe I am beginning to get some benefit. Bearing in mind that they are releasing a dose equivalent to about 120mgs or a bit more every 24 hrs, I would expect this. Yesterday I took normal doses of cocodamolx2 in the morning and lunchtime but didn't feel I needed it by the evening. This morning I took my normal gabapentin only. I'm now considering a dose of cocodamol but have been attempting to do a bit of cleaning as the house feels filthy. So, actually it's close to 24 hours since I took any cocodamol and haven't had any tramadol at all ( normally take a 150 sr in the morning). Writing that down has clarified that actually,so thanks for asking .

The point of the patch, for me, is to 1. Reduce the number of pills I swallow and 2. Hopefully have smoother pain relief which may even reduce the amount of opiate overall (not sure if that will happen but one can hope).

I need to monitor my intake and also my activity quite carefully to observe the benefits. Will keep you posted.

Sadly, on the downside, i am itchy especially at night. Itching is a known side effect of these drugs so I'm hoping it won't be too bothersome. I wake up scratching so it's hard to control.

Hope everyone is ok? Berrie, did the spasm settle? Tins, hope you are ok? Ally, any further 'smoothie' dinners? Should be a roast with all trimmings since it's Sunday?

I fancy soft boiled eggs now! ally hope you find some nice things to eat that is not pasta or bloody soup!

ins Hope things are reasonable with Mr Ins now? Is he apologising? Making amends? if not, he bloody well should be. Problem is, back pain is really, really bloody tough to cope with for a family, especially when you can't 'see' the injury. It's relentless for you, and thus for your partner, and sometimes you might appear to walk vaguely normally so it gets misunderstood as 'well' when it's not the case. DH and I have had some huge arguments, some real questioning of our relationship over the last couple of years when things have just become so unmanageable. Luckily, we for the most part, do get through them, but I still worry that each argument takes us a step further in the wrong direction. He assures me it's All In for him, but I question that, as who the hell wants to be with a person who is not the one he fell in love with? Well, is, but a grumpier, slower, less able bodied version of her. I hope things improve.

When do you see Mr S?

berrie you need some diazepam in your armoury, my GP is fabulous (both of them, as one is now off sick himself) and always ensure I have some in my emergency stash. I have had to stop naproxen in prep for surgery on wednesday, so I and a chat with her about worrying about travel to london and increasing muscle spasms even with the naproxen, she insisted I took more diazepam You don't need much, if you don't take it usually, 2mg is sufficient, although 4/5mg is better, 3 times in one day if often enough to reduce the muscle spasms. I absolutely hate those sudden spasms which happen for no real reason, often when I am cleaning my teeth

matilda so sorry christmas has increased your feelings of being down. it's such a nice time, but also such stress and for me it definitely highlights my limitations. I had a great time, but am also glad it's over and we have some normality back (well, er, sort of with London trip!). I hope 2015 brings a bit more positivity and some conclusions for you.

I have a rotten, stinking cold My nurse friend said as long as I am not too bunged up they should still proceed with surgery but I am worried. I started to come down with it on friday, and it's starting to feel a bit tight around my chest, and I am losing my voice and snotty. Kids have stinking coughs, so praying I can kick this. Haven't had this type of cold for fucking ages, typical. I am drinking lots of liquids (hot ribena) taking lots of vitamins/berroca, and echinacea etc to try and kick it into touch, but it's not working!

Fingers crossed it goes away! I just want this week to be over. DH is getting stressed about driving the car back through London in rush hour traffic and be stuck for hours. He's trying to convince me to come back by train 'i can't sit' 'well stand!' 'i can't stand for 4 hours!' 'well then sit when you can't stand' 'but I won't be able to sit' 'alternate' 'i can't fucking sit after surgery!' FFS. I have tried to get him to imagine me standing, in first class on the train, while high on morphine. I have asked him to try to envisage him coming into the tiny toilet with me on a moving train and trying to help me, while I am on morphine, to go to the toilet. He says I am being unreasonable by not discussing it, but we have discussed it over and over and over, train/car/train/car/train/car. I have made my decision and if that makes me unreasonable, then I will live with that

Oh mulledpav, that's such shitty luck about the cold. Crossing my fingers for you that it clears up really quickly & / or doesn't interfere with surgery. Which day is it? And how long are they keeping you in? Sorry if you've already said all this - have hardly been online over holidays.

Agree that the train is really not a practical option. Didn't even think of the loo issue, but yes of course that would be a total nightmare as well. Sympathise with your DH's driving stress too, though, as I'd be totally incapable of driving through London safely at any time. Think I may have forgotten how to drive completely, actually!

Good news about the patches, matilda. I'm guessing the butrans is less scary than the fentanyl? Can see the rationale behind the naproxen holiday too. I've never been totally sure how much NSAIDs help. Think I get stiffer when I've been off diclofenac for a week or so, but when I kept a drugs diary I seemed to end up taking roughly the same amounts of co-codamol regardless of whether I was on diclofenac.

Ins, sorry to hear about your problems with DH. It sounds like his relationship with his mum is a big source of upset, but not fair to take it out on you. How are things?

Berrie, how are you? Agree about the diazepam. It's the business for muscle spasms.

I've been so lucky re. pain this holiday. It's been better since Christmas, & I've needed very little co-codamol. Can't see any reason for improvement, unless higher than usual alcohol consumption counts! Haven't done much structured exercise, either, but a fair bit of walking - though I always walk - & definitely less computer time. Wasn't up to going to cinema with DH & the boys - don't like the seats - but don't feel as if I've missed out on much else. Haven't had very ambitious Christmas / NY plans, though, so I guess I haven't been challenged!

PIL visit went surprisingly well & there wasn't a single snide remark from MIL. If I had done a bingo card I wouldn't have done very well. Do feel as if I've spent the holiday cooking, but as it hasn't made my back worse I can't complain. Have needed DH to lift heavy joints of meat / cast-iron casseroles etc. in & out of oven.

How's the tongue, ally?

hi. hope you don't mind me joining you. I have been a nurse for 30 odd years, and mild back pain with the occasional debilitating flare - ups has been the norm for me, especially as I was nursing before all the strict manual handling rules became the norm. I usually dealt with it by taking initially ibuprofen and paracetamol, then in a flare up naproxen and have also been prescribed diazepam.
Then, New Years Day I was getting ready for work, having been careful only to have only one the night before, and somehow slipped and fell backwards down our 13 step flight of stairs, hitting the bottom 2 with my lower back as I went down - this has resulted in a mild concussion (I tried to make a new letterbox in our front door with my skull) and a L3 wedge or compression fracture. A+E sent me home on bed-rest until i go to fracture clinic on Monday, where I have been told I will probably be fitted with aback brace, and a prescription for Tramadol and Naproxen - which is only taking the edge off the pain, DH is frustrated with me as he is having to do the household chores plus things like taking my son's 14yr old twin boys) to get new shoes , buying the shopping etc on his own, and is saying "I tried get back pain all the time, and I get on with things" and "I was told it is better to get up and move when you have back pain " which is usually the case, but I have a bloody fractured spine, am awaiting a back brace, and tbh, in a lot of pain. I just needed someone who is in a simular position to off load to.

Just read through, the 14yr old twin boys are my own kids, forgot to put in the initial bracket!

loon DH will have satnav, and we are hiring a car so it will be nice and easy to drive, should be a smooth ride, rather than in our 10 year old car with a starting-to-fail-but-we-are-ignoring-it-clutch. I think he is more worried that I will be in pain for too long and the journey will be too stop/start for me. I have said we will manage, that there are no perfect solutions, and the car is the best out of the two.

Up to London on tuesday providing that a) they don't bump me and b) my cold doesn't get worse, then surgery on wednesday, no more info than that for now. I don't feel particularly unwell with my cold. If it was not for surgery it would just be one of those things and wouldn't interfere too much with life, I am just over stressing about it I think. It's sort of teetering on the verge of either going away or getting worse and hasn't made it's mind up yet. I will be furious (with the world in general, not a particular person) if it gets in the way as I have not been cold poorly like this for ages and so the law of sod is shining above me right now.

Feeling a little nervous now

bub you are very welcome here, sorry you need to be! what a horrible accident, and how horrible that your DH is being so insensitive! How on earth can he not distinguish between 'a bit of back pain' and a fractured vertebra! FFS you are in acute pain, with strong painkillers not touching the sides and he is moaning because he has to do some more shit?

You are definitely allowed to come along and offload here.

in all fairness, DH has got Aspergers, which makes any change in routine difficult, but I am just p**sed off with his attitude - I know he is worried about the money side of things too, I don't get paid when I an off sick, but I have already said I will talk to our bank monday about a mortgage break, as we are entitled to have one if we need it.

Thanks to ins I had a lovely soft boiled egg smashed over a bit toast this morning - ace! Baked potato for lunch (a bit of a fight with the upper stitch but nothing compared to before) and fish for tea - almost normal lol! Just a wee bit pain and numbness now and going without drugs (mostly). Now am just waiting for the gorilla to jump out of the cupboard with a cheery "did you miss me?" Ummm no not really lol.

Mulled so hope they don't postpone your surgery (fingers and toes crossed). Glad you are sticking to the car for the journey home - I think the train is not an option. Have to say we didn't even think of that but then we knew nothing and stupidly asked nothing either. I had a fight with OH yesterday after the 100th time he laughed at me trying to get into the car - he's being really nice now. As you say they didn't sign up for the cripple stage but he does his best mostly.

Re cleaning teeth (which causes me a few wobbles too) I've found if you "dry" clean mostly and then (still keeping straight) put your hand under your chin rather than leaning forward other than once to final spit. Means my pjs are always covered in toothpaste but causing less problems than before. Sorry if you are already doing this - its all I've got

bubby yes your OH is being an idiot - it does however take them some time to realise its serious (quite apart from painful). Sorry the drugs are only helping a little - I'm sure someone here can suggest an alternative for you. Ah x-post - I see he might take a bit longer to get used to it. Hope you can sort out the money side.

Mulled if I don't speak to you before you go in - good luck! We will all be thinking of you!

Hope I didn't miss anything but you know I have no brain

Bub that's awful! I hope he gets over himself and starts giving you the support you need. Honestly!

Mulled fingers crossed that surgery goes ahead (bugger off cold!) and your journey home is ok.

Glad the patches are starting to work Matilda

I did end up going to my nephews party, it was strange as I was quite out of it on diazepam! DH ended up taking the day off to look after me so I spent the rest of the day in bed.
I'm now wondering about work tomorrow. Ideally I should stay home as I'm in so much pain but I've only been in the job 7 months and they've already been brilliant considering I injured my back before I got the job.
I.may ask to work from home instead. Undecided but so pissed off that the appointment with the consultant has set me back so much. I have no idea what she did other than push down and kind of wiggle my coccyx. It makes me feel sick just thinking about it. Now I have to wait about 6 weeks for my injection

Berrie definitely diazepam! It has helped me alot this weekend (even if it just means I'm a bit floaty so don't care so much about the pain!)

Wishing a Pain free Sunday to all of you

Everyone, hello.

Bubby, hope This helps

pavlov, do not attempt to drink fresh finger .

On the other hand, fresh ginger could be good.

Oh god I'm so pissed off. Have been talking to my friend about my back and she tells me I just need to do someexercise as that cured her slipped disc. GAH! I don't know for sure what's wrong with my back and I'm in fucking agony, I'm sat here in tears as I'm so pissed off with people not understanding. And I'm pissed off its been like this for so long. I needed that rant....sorry all!

Don't be sorry Tickle . That's the nice ting about here - we've all been there and know exactly how you feel. Your friend was probably just wanting to help you or she is and insensitive cow
Matilda Glad things seem to be going well.
Ally Happy your menu continues to extend!
Pavlov I hope your cold starts to clear up. I would be nervous too but hopefully things will get so much better for you once this week is over and that's exciting!
Bubby Nice to meet you - your accident sounds horrible. I hope your family learn to be more helpful. Sometimes they just have to.
Loon glad that things seem good for you just now.
I'm doing well. Quite sore but mobile. I was in such a terrific panic when it happened as it really hurt to fill my lungs for a good ten minutes and my arms were useless. Feel a bit silly now since it turned out much better than initially expected.

Tickle

wow matilda you always put things better and know so much - hats off to you! What a lovely help you are in here!

Tickle - you have to train your friends - I am still working on it - they mean well (hopefully lol) - they only REALLY understand when they join the club and put their back out (I've had 2 now in 7 years saying "omg - now I really know what you are going through" etc) - its a long wait but worth it

berrie so glad to hear it wasn't so bad after all - I don't think the fear ever leaves us eh?

Thanks Berrie and Ally
I have just had enough of well meaning twots telling me things I can do to 'help myself' when they have no idea what they're talking about. I don't even know if ive got a slipped disc. All I know is I definitely have coccydynia and an MRI booked in. Other than that I'm still in the dark. And I HATE it when it's suggested that I just need to get off my fat arse and do something about it! Sorry there I go again!
I've also had temporomandibular joint disorder for the last two months and pins and needles in hands now as well as feet so I'm a bit freaked out about it all and feeling more than a bit depressed about it all. Thank god for this thread and for you all

Tickle, yoga!!! That would sort you out.

< rolls eyes in sympathy>

Yes Matilda! Exactly! If only I'd try

Tee Hee... though I'm not sure my fat arse is not unrelated!

tickle for you. I recall this from so many people, including Mil, who told me I needed to hang from door frames regularly to stretch my spine and sleep on the floor as that cured her back problem, which was the same as mine, clearly Did you tell her how it really is? Did you get upset in front of her? It would not have hurt to do so, so she could see how insensitive she is and how serious this is for you. The problem is, lots and lots of people have or two episodes of acute back pain in their lifetime, from which they fully recover, and they use those episodes to base their empathy, rather than considering that this is actually not one of those episodes. She needs to realise, if she is to be supportive as a friend, she understands that this is not, at this time at least, a problem that can be solved by exercise alone. In time, maybe exercise will feature heavily in your recovery, but not right this second, well, yes it does, but not hardcore exercise, gentle movement/physio type only.

I remember joining the gym because I was told that I needed to strengthen my core, as that was most likely the problem. I didn't really consider that, although I didn't do regular exercise as in the gym etc, I ran regularly, (not consistently, once a week, twice a week occasionally, just when I felt like it), I swam in the sea, kayaked, bodyboarded, carried my two children most places and actually probably had pretty lovely and strong core muscles! Like my pelvic floor, I absolutely needed to strengthen that, as clearly, having had two children I must have poor pelvic floor, however, my 'floor' is stronger now, after two children than it ever was (well, possibly not right now but post babies definitely).

matilda I think I would prefer fresh fingers to ginger! I don't like ginger and reminds me of puking throughout my pregnancies, in particular with DS, every person I met said 'have you tried ginger?' Actually I can now tolerate it mildly if it's in a curry, but not as it's main flavour, not in chinese really, and absolutely not in any sweet form, or in a drink. I have been drinking lots though, had honey and lemon, hot ribena, and that effervescent berroca that turns my wee orange Feel reasonable, bit achey, bunged up, but as I said, if not for surgery, would not be anything significant, maybe a little moan about it but not too much. Wonder how much of a coincidence it is that I got this bug as soon as I stopped naproxen?

How you feeling matilda without the naproxen? you said you were having a holiday. I think it's probably a good idea from time to time as it's so harsh for our bodies.

tickle ok, putting aside the terrible guilt we feel about not being able to work, because they support us and are kind when we are sick, so we want to get to work to show them we can do it. Lets talk legal, as you said you have been in your job for 7 months, and they were aware of your back problem when they employed you...

you are protected by the Equality Act and so you cannot be fired for anything related to your back problem without them going through specific routes and adhering to the Equal Act legislation. A disability in the workplace is considered a disability if it affects your ability to complete daily tasks (whether at work or not) and if it has been a problem for 3 months or more. Once you are considered protected under the Equalities Act, you will remain so for the rest of your employment in relation to that specific condition, even if you recover from it, then have a relapse in the future. This applies whether you have been in your job for 1 month (if they know you have a disability) or over a year (the normal 1 year, or is it 2 years? protection doesn't apply to statutory law).

So, on this basis, the fact that you have been in your employment 7 months is irrelevant in terms of your job remaining secure. Your employers are supportive, and that is great, so yes, it's important to keep them on side. However, it's also important that they help you in your recovery, and if that means that for now you should not be at work, they will/should support that decision.

it's better, from my employers perspective, and many others, to be off work for a longer term period (i.e. several weeks) than be at work for a few days, then off, then back, then off, and during the time you are at work, not working well. If you need a few weeks off to get yourself in a better place so you can return properly and ready to work well, that's the best thing for you, and your employer.

Also, this may have already been said, so apologies if I am repeating or teaching you to suck eggs, but, have you spoken to your employers about adjusting your workload, reviewing your desk space (if you have one), working out a plan re regular breaks, assessing your needs completely. My employers have, for example given me a hydraulic desk, which means I can sit/stand as needed, positioned it closest to the toilets, to the staff room and the list so my walking is limited. this means I can actually be at work on days when I would have in the past been off sick. Your employers have a legal obligation to do everything they can to help you stay at work, and there is funding for them to provide assistance if they need to spend money to do this.

So, after all that, I would say, what you need to be asking yourself, which I think you have done and I suspect you know the answer is, are you actually well enough to be at work tomorrow? You said you are in huge amounts of pain, so what would you tell someone else? (i get told off for this all the time on here, as I rarely listen to my own advice about going to work/staying off work!).