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

Hi all, I had lost you! Thought the other thread seemed quiet -didn't spot it had reached 1000 posts.

Full of cold here so feeling shite in numerous ways, & at that constant coughing stage where it makes your back hurt. Also struggling with the feeling of being kind of shut out & on my own now the consultant has discharged me.

I know it's not rational as I'd worked out by myself that I wasn't a great candidate for surgery. But even so - the last few days my leg pain has been bad - both legs, & the left leg pain is relatively new - & I feel much more anxious about it now I'm no longer nominally under specialist care. Still get strong positive results in slump test & don't know if that's consistent with nerve pain being predominantly chemical inflammation. Hmmm.

Matilda, I wasn't copied into consultant's letter. I've never ever seen a consultant's letter, & I've seen enough consultants over the years - had loads of ENT problems in my 20s, & recently have seen orthopaedic foot specialist re. toes as well as neurosurgeon. Had absolutely no idea this was something I should expect.

Thanks for the info. about toe joint replacement, Berrie. So there's at least one bit of me that could, in future, possibly be fixed!

Frosty, good that you've clarified about the surgery. I was absolutely at notion that you may go under thinking you were having a discectomy & wake up having had a fusion!

These surgery decisions are so difficult, though - I really feel for you, mulledpavlov. In many ways it's so much easier having an op. where you're just told it's necessary & that's all there is to it.

Haven't caught up with new thread yet. Will settle down to it later. Looks bright outside now (was hailing a bit ago here!) so think I'll attempt some exercise. Feel bloody sore today though - all the coughing, probably. And couldn't sleep until about 3am even with diazepam, which hasn't helped. And it's a Fast Day (have been doing 5:2 diet since September) & I'm really hungry! Normally find it fairly easy & have lost the weight I'd put on, but today I want to scoff unhealthy sweet things.

Mr S sounds great. You must feel in safe hands, mulledpav. Amazing & scary how MRI results are read so differently, though - & how major issues are missed.

Missed all the stuff about your car, matilda. Sounds wonderful.

Really am going out now.

Mulledpavlov your story made me I can't believe it. I'm very hopeful for your January surgery. What is the hoped for outcome?

I am relatively new. I have had had lower back pain on and off for 8 years which has usually righted itself with bedrest, drugs. Post childbirth pain came back. (DD born in august 2014) in early Nov leg pain started. GP , osteo, 2 a&e visits, 3 very painful physio sessions, drugs not working- I demanded an MRI which confirmed new and evidence of old disc herniation at L4L5 pressing on sciatic nerve root at L5 in 3 places. Went to see neuro surgeon recommended by lovely ambulance lady who took me to MRI. He'll probably be performing microdIscotemy next Tuesday. Getting a second opinion tomorrow at spinal specialist hospital at 8 am before pre surgery discussion with neurosurgeon at 11am. The people on this thread, being in German health care system crying a lot on the phone with help from baby DD crying in the background has moved things along quickly.

That's a busy day Frostydom. I hope it all goes well, and helps you be sure of your decision. Its nice your mum is there now, to help with babydd and TLC, whilst you and dh make decisions and sort out practicalities.
Loon would it help to see the specialist again do you think? Could your GP refer you back or would you prefer to wait and see for a while? If you haven't been formally discharged it might be possible to request a return visit (I have a feeling things may have changed from the days when outcomes could be left open so patients could slot back into the system as needed). Hope the diet goes well. I hate feeling dizzy from hunger, so feel for you.

cold how you are feeling now you are up and about? aching eased? Keep an eye, hope it's not the car, but then again, also hope it's not anything else more long term.

frosty you decided re surgery yet, or waiting to see second opinion on friday before deciding? I have had similar wobbles about whether they might just fuse if the surgeon is not happy with how all looks inside, but, I can't believe that he would do something so invasive and difficult to recover from without planning without discussing that as a risk with me first, which he has not. but, did your consultant have that discussion? If that's a concern, you can make it absolutely clear, in writing if necessary that you do not want fusion without being fully aware of that happening. It's not so much for me that I don't want fusion. Right now I will do whatever it bloody well takes to get me mobile and low pain again, but I want involvement in that decision, and planning and preparation very much needed for that.

oh bollox! it's the christmas school discos tonight I am never gonna get this bloody tree up

mulled I'm 90% sure I'm going to go for it. Can't move without crutches and then only to the loo. Left bum through leg either searing pain or uncontrollable shaking. I rang surgeon and he explained there is no way I'm waking up with fusion. He's doing a microdiscotemy via the back, with a microscope operating on an incision area no bigger than his thumb nail. He told me to never ask his assistant any surgery related question other than logistics as they only gave the vaguest idea of what goes on in an OP. More opportunity fir discussion tomorrow at pre op meeting.

frosty that's great. I had microdiscectomy last year and the scar is tiny.

Morning! Or rather afternoon. I think the amitripyline has started to kick in... I went to bed at 1am feeling slightly sleepy and woke up ten minutes ago On the other hand it's the best sleep I've had in weeks so is probably good for me!

My recap: In a nasty car accident abroad on 31st August caused by a drunk driver. Accident has best possible outcome in that we all managed to walk out of the vehicle (honestly - at that speed we were very lucky) but I have had persistent and severe back pain that has developed tingling, numb patches (arms and legs and bum) and wobbly legs. Still waiting for my MRI scan as in Greece they weren't bothered and here also not bothered! Thanks to everyone on this thread I have been able to ask for some things - like my MRI scan - and I am waiting not quite patiently for the 23rd December when I will have a scan on my cervicothoracic and lumbar and sacral spine. Meanwhile I am semi-signed off work - working part time with the aid of paracetamol, ibuprofen, tramamdol and (now) amitripyline as I am also seeing someone at the musculo-skeletal clinic who is the sixth person to diagnose me without a scan and reckons it's all down to damage to my brain/central nervous system processing.

I am actually quite looking forward to today as I have no deadlines at work! (Yesterday I had to call someone whilst a bit loopy on Tramadol... quite professionally embarrassing.) So going to wrap some presents, send some post and have my counselling appointment this evening.

My question of the day - are those the right areas of the spine for them to be MRI-ing? I never thought to query it. My pain is at the area of my bra strap and at the area of, roughly, where high-waisted trousers would be all the way to the base of my spine, where my tailbone is pretty much agony (I need to sit in a certain way - but it has been like that for quite some time since a separate accident where I suspect I damaged it but thought they couldn't do anything with it so never bothered going to the Dr.)

Loon Kudos to you doing a diet whilst going through this! Not sure how 5:2 works... is it calorie based? If so can you scoff a load of Ryvita? They have a sweet one with raisins and seeds on that almost tastes like a nice biscuit and Ryvita is usually about 30-40 calories a slice. I used to do myfitnesspal but couldn't keep up with the logging.

Pavlov I'd be tempted to ditch the swimming... If they aren't going in the sea over Christmas I'm guessing you aren't as negligent as my parents who let us do it in January! then it can wait until the New Year and they will get their badges. But Christmas happens once a year - swimming, plus discos, plus tree sounds like something even I wouldn't do. So I'd be tempted to pick something festive instead, either the disco or the tree. Can you get the tree and leave it outside until you have a spare hour to put it up? Or if you think they are going to be upset, could you give them the choice and say, we don't have time to do all three - which would you like to do?

mulled, omg something's got to give. Given that ds may be unlikely to be going in the sea very soon, I would ditch the swimming, though only you can call that one and the disco may have already made that inevitable. Can you call in some help for doing disco duties? I know you hate asking but your friends would be sad not to be asked when you are in such pain.

freedomfrosty, wow! I hate to stereotype but those German HCPs are bloody efficient! How on earth do you get a consultation at a spinal hospital at 8am the next day..

Waves to everyone else, it cheers me no end to read all your posts. Well not all your pain but you know what I mean.

Saw Lovely GP this morning. Went in at 9.15 came out at 9.50 . She is amazing, she'd done heaps of research and sums and I am starting fentanyl patches on Monday. I have a three day titration plan so I don't get a period whereby I don't have enough meds on board, it's all written down. She will phone on Monday and I will go in Thursday. I wish you could all have my GP.

Also, for those who may remember my deeply dull yet stupidly important pension saga more happened. I spent a year waiting while the nhs pensions (ATOS) looked into my ill health retirement claim. GP filled in her bit, me mine and a million pieces of evidence. They then wanted more and more from all the consultants. The aforementioned MrS who is also my surgeon and hero finally provided the report (£250). Then they awarded me the lower level pension citing one and only one reason. I appealed, providing categoric evidence on this point by my Neurosurgical Expert Witness. After eight weeks I chased them as this was their own imposed deadline. They replied that they needed more info and have written to.....my GP .Arghhhhh . Anyway this is actually good news as she is 100% supportive and will tell them so. What a fucking saga. What a way to treat sick and disabled members of the nhs workforce.

Work top being fitted. Kitchen Hell nearly over. It is all going to be gorgeous but never be fooled that having Work done is nice. Holds hands with mulled

my neck shaped wheat bag arrived in the post this morning, and it's made working today so much easier - I'm an accountant and working on spreadsheets on the computer (even though I have everything set up as per physio instructions) is pretty hard . Took me ages to find one which didn't have lavender in it though, and looked like it could be for someone under the age of 80 though .

Not finding the constructive rest making any difference other than to amuse the woman I share my office with - how high off the ground should the back of my head be?

I am liking the naproxen though, I no longer wake up in the morning with everything from shoulder to shoulder aching.

Good luck to everyone trying to fit in Christmas stuff with small DC, thankfully my DDs are teens, so are pretty self sufficient with most things. Our tree doesn't go up till after DHs birthday on the 13th, and as I'm out most of Sunday, it will all have miraculously appeared when I get back .

Matilda Re: pension, if they have broken their own guidelines can you lodge some form of grievance or formal complaint to make them hurry up? I will try and get the right phrase from my DM but (being vague as she hates me saying stuff about her on the internet) she draws a vaguely-govt pension (similar to NHS) and they broke all their guidelines on retirement notice etc. and she lodged a grievance, argued loudly with a manager and got everything she was entitled to... I will ask her how she did it and send you a PM later today. Not sure if it will be helpful or not as I imagine you have tried most avenues.

Ins, they wrote to me on the 40th day, with 40 days being the rule so I suppose they are just about on the right side of the rule. Tbh over the last two and a half years I have been worn down by beaurocracy. It's really pushed me to the brink. I have hundreds of letters, emails and paper trials. I've had my pm involved time and time again. It is a heartbreaking eye-opener how our country treats it's sick and injured .

However, this time they have shot themselves in the foot if they think that by writing to my GP they might find a way of not giving me my rightful pension. She will write a stoking letter of support and hopefully, hopefully I will finally have it sorted.[fingers very crossed]

leaping,your head should be off the ground by about an inch or so, a book or so is about right. Just the very back of your head should be supported. I don't think constructive rest is a miracle cure but it does pull your spine into shape each time you do it which has to be a good thing.

Sorry' pm should be MP.

swimming ditched. Can't make it with disco as well. I went to second nativity, was allowed to take both children out early, so nipped to supermarket with a small prepared list for dinner. I am doing dinner (pre bought mash, pre sliced carrots) in a moment, in my new kitchen ! then getting DH from work. He is doing all he disco runs, and I will chill out. We are doing the tree tomorrow. We are listening to some christmas songs now though.

You are right, they are not going to suffer by not practicing swimming for a few weeks. They might however go for a swim on News Years Day, if I go in. Only a dip and with their winter wetsuits on, and only if it's a crisp and calm day. I went in last year, although getting my wetsuit on and off it very unlikely nowadays so that won't happen I expect.

matilda I cannot believe they are still fucking you about with the pension, talk about running round in circles. How much actual evidence do they need to make the correct decision? You have evidence coming out of your ears, what more can your GP add that is not already known in abundance?! on your behalf.

YEY for new kitchen! We have indeed made it, although we still have more to have done this weekend. Builder has a couple more little snags to fix, another cupboard and shelf to put up, and the to build our larder. But, table back in at weekend and I am loving how much bigger it feels. It's not like it is actually bigger, but if feels so much so. (might not be the same when the table is in again). I bought a poinsettia to go on the table

Hello all,

I've been suffering a lot lately and am thoroughly fed up. Started with lower back pain and sciatica. That eased although still twinges, then I woke up one morning, out if the blue with a painful neck. Assumed I'd slept funny but it progressed over the next couple of days to shoulder, arm and hand pain - aching and shooting with some numbness in the shoulder.

Visited Gp twice, she said it was torticollis, but I remembered I had an MRI about 7 years ago which showed bulging discs at C5/C6. Dr agreed this could be the problem, said it may flare up from time to time and sent me on my way saying if no better in 2 weeks to go back.

It did ease, which was great.

2 days later I woke up with severe pain in my upper back. It's been 4 days now. Tramadol, diazepam 5mg, ibuprofen and paracetamol help a little but I'm just so fucking fed up.

It hurts to move, breathe, I wake up and feel paralysed.

I don't know what to do, who to see or what I should be expecting.

I'm scared that this upper back pain is something serious thanks to Google.

I'm only 35 but I feel 85

Hi All

I'm a newbie to the thread but have been lurking for a while.

I know you all have lumbar issues but mine is in my neck. I have had neck and shoulder pain for about 8-9 years. It was brought on by a job I had.

Anyway I have had intermittent pain until a few years ago when it became chronic. I experience pain and tingling in my right shoulder, down my arm and into my hands. I also have marked weakness in my right hand.

I had a MRI which showed on C5-6 a central to left subarticular disk protrusion, touching the left side C6 nerve root.

The doctor I saw said because the pain I experience is contralateral (on the right side) then it's nothing to do with the disk and that was that.

So , I just wanted to know if anyone had a MRI which showed protrusion more on one side but you experience pain on the other side?

Waves to AnonButRegular..fellow neck pain sufferer. Can you go back and see a different GP sooner and see what can be done?

Hi Krusty, my first MRI did show greater protrusion at the side where I had more pain (right side), but showed enough nerve impingement on the left that the consultant was surprised that (at that point) I had absolutely zero pain on the left. My pelvis was really twisted, though, (L5/S1 herniation) so I think the left side was kind of twisted away from the protrusion.

Is it possible that your neck is twisted / out of normal alignment, taking the left nerve root away from the protrusion? Could that be impacting on the right side? Pure speculation, though. I don't know much about cervical protrusions.

Anon, sorry you're in so much pain. I don't think you should worry too much about the upper back pain being anything sinister, though. I know Google makes you think thoracic spine pain is very unusual & often a sign of something serious; & if it occurs in isolation it obviously is something you'd get checked out ASAP.

I can certainly say just from this thread, though, that if you have lumbar / cervical spine problems it's very common to then get knock-on muscle pain & spasms - which really can be excruciatingly painful - in the thoracic spine too.

I'd be tempted to give it a couple more days of the meds. & trying to rest your back as much as possible. Then it probably would be sensible to go back to the GP, especially if it hurts to breathe. Muscle spasm can do that, though. I wouldn't have believed how painful it could be until my problems started affecting my upper back in the Spring/Summer.

If you can afford private physio & know of anyone good, that might be an idea too. NHS waiting lists tend to be long & it's often not very hands-on. A good physio will be able to tell you what's going on with your muscles or if it's something else.

Matilda, not surprised you're so worn down with the bureacracy & paperwork. It is absolutely dreadful. Hopefully your GP's evidence will stop the bastards fucking around any more.

Mulledpav, hope you have a relaxing evening. The new kitchen sounds great.

My left leg pain is really grim & all down the nerve root. Can't believe the leg pain has come back so badly & in both legs - right actually better than left now, which does sort of correspond to the latest MRI I suppose. No symptoms of real nerve compression - just don't think there's enough disc nucleus left for that to happen. But I guess it's just very, very inflamed in there.

krusty and anon welcome. Although the majority of people's lumbar pain related, there are some who have neck/cervical spine pain, SI joint pain, and at least one who has multiple level issues, so you are very welcome here. Hopefully those with upper spine issues with post soon.

krusty I am pretty certain that I got pain on both sides with a disc prolapse that was mostly on one side. And depending on the type of prolapse, it can switch - i.e. if it's a central disc bulge but is more on one side than another (I had that), the disc bulge can shift from one side to the other. Sometimes it's only a little, sometimes, such as in my case, it was a marked shift from right to left sided (I won't blame the phsyio who insisted I did cobra exercises to get my posture 'straight' again, noooo). And, also, things change, and health care professionals (hcp) are on occasion, Wrong. Who is the 'doctor' that you saw? is this a surgical consultant? a pain doctor, or GP? Depends on who it is you saw as to where to go next. Also, referred pain is common, and there may be other stuff going on, such as facet joint problems that often go hand in hand with disc problems. Do you have the MRi report itself? Might be worth asking for a copy to look at yourself.

anon who have you last spoken to, and what have they said, other than 'here have lots of painkillers?' this acute phase will pass, although it might not feel like it now. The acute phase of a back 'going', upper or lower pain, is so horrible it can feel like something really fucking serious is going on (I can't say if it is or isn't, doc needs to confirm what's happening), and i remember being unable to move without pain or screaming out and thinking that I was never going to be able to move again. So, first thing is to relax as much as you can, take the maximum painkillers, take the diazepam as prescribed, and any anti-inflammatories and rest. Second thing is, ask the GP what is likely to be wrong, and what he/she is going to do about it. The numbness in the shoulder suggests it could be nerve related. Keep an eye on that and keep your GP informed about any changes/numbness/pins & needles into the arm/hands etc.

Have either of you tried heat? a heat pad is awesome for helping to relieve pain.

Hi
Anon sorry to hear you are suffering an acute upper back problem. I get acute upper back pain which affects breathing, ribs and one or both arms with painful numbness. I have a bit of scoliosis with a tendency for the facets (bony locking bits) to lock up and crush nerves. Its very painful and I know exactly what you mean by feeling paralysed since all movement is nearly impossible. Actually it is impossible to sleep too, since breathing is so painful and cannot be stopped. I usually get very ratty! Anyway I usually see my chiropractor urgently, who can usually reduce the lockup, leaving me with a kicked in the back by a horse feeling but more movement. However my back could be different, and I suspect physical manipulation may be unsuitable for disc trouble. I have various techniques to try to reduce the lock up myself but I think you need an expert to see you first. One gentle movement that may be helpful if you cannot move much, is to fold your arms across your chest holding your opposite shoulder and very gently twist a little bit ( a couple of degrees only!) in each direction. No bouncing or forcing it, or twisting with your hips. This is to try and get a bit more movement. At the acute painful stage I usually find cool packs useful - to reduce the inflammation -but not if your muscles are ceased up and in spasm.
I have problems at several levels, and its very long standing. I am at last going to have MRIs of my back (all levels).One of my first upper back lock ups (in my misspent youth) occurred on a climbing trip which was very inconvenient!
TInselaffe it sounds like you are due to have most of yours MRId too.

Krusty and anon - sorry to hear your your pain. People on thIs thread are amazing..

Mulled hoorah for kitchen. And well done for giving swimming the sack

The sum of my morning is - surgery on Tuesday.

frosty very good luck for the surgery, we will be here to hold your hand through it. It sounds like you will have the absolute best care possible during and post surgery, the recovery plan sounds good. BUT. Importantly, do you have a fusion curry menu? It's true that you will be expected to get moving very quickly, but that is not walking miles, it will be using a commode, then a few steps from the bed, then a walk to the toilet, then some steps (not on the same day, and possibly not even the commode on the day of surgery, depending on how you are feeling). It's done slowly, and with physio supporting you - that's how it was for me at least, and it sounds like your physio and rehab is much better than here so you will be fully supported and won't be expected to run marathons within weeks or anything

Builder is back, had a bit of a stress about hanging rails (ikea ones). DH attempted to engage me in conversation this morning, I said we had a while as builder is grouting first. Builder turned up while DH was shopping and said 'lets get these rails up, you figured out where they are going? need to do them before grouting as the tile will have red dust as I drill. Cue running around trying to locate DH who didn't take his phone, and then a while figuring it out. Actually worked out better as we were dithering about a few things and he said 'not a good idea' to a couple of our ideas, and 'yes' to one we thought of but didn't think would work. But, wow, didn't know rails could cause so much stress. Still not over, as decided to not put one up that we bought to go along a long wall, and I am stressing about whether I want it up! Builder said he will come back and do it when grout is dry over coming weeks if I change my mind, will just have to cover tiles so grout doesn't get covered.

Hope everyone is doing ok and are quiet due to lots of lovely Christmas things going on. Tree not up, as DH decided to go shopping and organise the cupboards instead. I started it this morning, he told me to stop as he wanted us to do it together. FFS it's only fixing the tree bits together