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Back to Back Trouble. The Back Pain Support Thread.

998 replies

Matildathecat · 02/06/2014 18:08

This is a support thread for people with back pain (that does not even cover the description of hell that back pain causes). It's for all types of back pain, for long term posters with chronic pain (including those on the upwards journey to recover), short term advice through tough acute episodes and all the in betweens.

We moan, winge, share successes, guide each other and hand hold through the maize of a million medical routes and options, treatments, investigations. We internet shop as a form of pain relief, drink wine, take strong painkillers, eat cake and we go through lots of heat packs!

We don't always have the answers but we do have a lot to say about it all Smile

Here are the links to our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues
www.mumsnet.com/Talk/general_health/2023274-More-Terrible-Back-Stories
www.mumsnet.com/Talk/general_health/2049637-Back-Again-Back-Pain-Support-Thread?msgid=47419209#47419209

And some other useful links and info:

www.patient.co.uk/health/cauda-equina-syndrome-leaflet

We have done the hard work for you and learned about effective drug combining. Using NSAIDs, a stomach protector, paracetamol with or without codeine (it enhances the codeine), nerve pain meds such as gabapentin and/or amytriptiline can all be more effective than simply taking huge doses of opiates. Of course most people won't need all of this but for severe prolonged back injuries this is helpful to know.

Heat, gentle exercise, TENs, medication patches, diazepam and accupuncture, we've tried them all.

So if you are suffering come and join us, were a social lot. Smile

OP posts:
Cinnamonandfruitloaf · 29/07/2014 10:52

I'm overseas probably why the names are different. Lyrica is pregablin and Celebrex is a NSAID. Norspan is a opioid patch, endep is amitriptyline. Sorry for the spelling mistakes! It's bedtime here and the Lyrica make me very drowsy.
Chat soon.

Millytint · 29/07/2014 10:58

Where are you cinnamon... Nearly bed time here in qld

HolidayMummy · 29/07/2014 11:29

Hi. I have just been sent over by Matildathecat after my post this morning "In total despair. Nobody will help me"
Today is an AWFUL day & I don't know where to turn now. My complete (ish) story is on the post above but basically it started with very severe SPD in pregnancy, went via a triple spinal fusion that went horribly wrong where they left me with PTSD & bone floating around my back & has ended up with me not being able to control/feel my left leg properly, on 60mg/day of slow release morphine, 7 Tramadol/day, 7 Paracetamol/day topped up with more morphine & diazepam when needed (most days).
I have just been told my surgeon has no negligence case to answer, so I can't raise the money for more pioneering keyhole surgery that might help me - they found the floating bone & took it out.

I got discharged from the local pain clinic a couple of years ago after a 9 month wait & its only my GP managing my pain - basically she just increases the slow release morphine about every 3 months which I feel is unsustainable in the long run.
I constantly feel awful, every day is a struggle & it is only my husband (who works in London so isn't around during the day) and my 2 boys aged 8 and 9 who keep me going. But, I do still horse ride once/week sticking my flappy leg to the saddle with Velcro because it is the only time I am ever treated as "normal" & generally keeps me sane. When out of the house I use a wheelchair.
I have lost many friends as they don't know how to cope with my illness & as I don't work or go out much because of the pain, it is difficult to make new ones.

Sorry everyone, this sounds just like one awful moan, but today is a particularly BAD day - normally I do my very best to stay positive (hence the horse riding) but I feel like I have been given a complete body blow. xx

Cinnamonandfruitloaf · 29/07/2014 12:28

Mildly, I'm in Sydney...
Holiday mummy, sorry you are having such a terrible day. The horse riding sounds good for your sanity so I would keep it up if you can. Being in pain every day is debilitating, can you see your GP again and ask for an urgent review of your pain medication? I'm sorry I can be much help as I am just starting out here and am unsure of what the NHS can provide nowadays. Hope tomorrow is a better day for you.

Jasminesoft · 29/07/2014 13:19

Sorry to read about so much pain on the thread this is a truly awful condition.

Holidaymummy what a shocking situation for you, will your GP not be able re-refer you to another consultant to assess your current condition?
Forgive me if I am asking an in-appropriate question.

I am also new to this thread so cannot offer much advice, the ladies here are all lovely and very supportive.

I slept better last night for the first time in weeks but I think that it was because I shared some champagne with a lovely friend.
I need to try and see my GP this week to discuss pain meds.

Matildathecat · 29/07/2014 14:09

holiday mummy glad you have found us. We are a very friendly bunch of back sufferers and whinging is what we do best so no apologies for having a little offload.

If you have just received the news that there is no legal case to answer, I'm sure you must be feeling beyond despair and desperate. So just for now allow yourself to feel crap, why not? It is crap and you have been unlucky beyond all measure.

It's good that you have your family around and as the boys are young I imagine you have to get about a bit and have some social interactions. Keeping busy keeps me saneish even meeting for a coffee. I like the water so swim quite often and do a hydro program to keep as much residual fitness as possible. Weekly massage and Pilates helps, too. I do find that too much time on my own is the worst possible thing as dark thoughts do creep in.

I did a pain management course which was of some benefit. More helpfully it has accessed me regular counselling and Alexander Technique lessons which have been interesting. I'm currently looking into finding a new pain consultant to see privately just a few times to get my meds to an optimum level. I do think I could get things on more of an even keel than they are at present. I'm thinking of using patches to see if I can prevent to current seesaw of peaks and troughs.

I'm sure you have had endless appointments and assessments but sometimes it's worth getting a fresh pair of eyes on your situation. For me that was at The National Hosp for Neurology and Neurosurgery in London. Others on here have done the same. I did at least get a clear diagnosis there and they will have access to the best available on the nhs. But I'm sure you know all that.

Keep posting, others will be around later, I'm sure. The main thing is, you are not alone. We understand and can try to support you.

OP posts:
PavlovtheCat · 30/07/2014 15:05

cinnamon and holidaymummy welcome, but so sorry you need to be here. I will read through properly and post for each of you, I have no paper and my thread is on a roll not on pages, so I have to scroll a million messages to get to the top to remind myself of what I am posting about and to whom!

I think the stinging pain I am feeling is not nerve pain. Or, maybe it's nerve pain, but the initial source is not the nerve iyswim. I am thinking this because, there are two distinct nerve pains going on (as well as the usual mechanical back pain going on):

The usual hard and deep pain which goes down my legs, sometimes stabby, not always, sometimes period type pain, but very clearly nerve related - from that I get pins and needles (rarely these days though) in my feet, often in my buttocks (in particular when I sit) and numb patches in various places. This is usual and is something I have had on and off for 2.5 years to various degrees. It is annoying and painful but, manageable much of the time, peaking in levels from time to time, normally when I overdo it. I know that this pain is not relieved by using tramadol, codeine or other 'normal' painkillers, but is helped with amytripyline etc etc.

Then there is this stinging pain. This was not really present before surgery. Not that I noticed in huge degrees, although I was in so much pain nerve and muscle spasm wise that I may well have not noticed the type of pain. This pain goes from very deep in my spine, right into my buttocks, into my groin and pelvic area, down into my legs, knees, calf and feet, the more severe it is, the further down it goes, and with it, I also get a period type pain, like a contraction almost that sort of ebbs and flows. It also does feel like nerve pain and sometimes I do find it difficult to differentiate between both pains, they are clearly mixed. But. This pain seems to reduce, sometimes to almost nothing when I take a shit ton of painkillers (tramadol and codeine). Monday and Tuesday I absolutely walloped the heck out of this shit with opiates. Yesterday I felt so so much better. Still painful to move, to bend in particular and to straighten properly but better.

My fuzzy head and shocking sleep however meant that today I decided to reduce the painkillers a little. I woke feeling groggy due to bad sleep and meds, and back pain I felt reasonable. We went to the beach, there by 9:30am as I was desperate to get out and see the sea (it's my meditation to some extent), lovely and quiet, I literally wet my legs in the sea, almost falling over as the pebbles moved from under my feet by the waves! Shock jarred my back! not badly really. I did not do much at all. Came home and cleaned the kitchen, a little, emptied the fridge and cleaned it ready for shopping that arrives this afternoon. I was feeling so much better I was thinking that it was a good job I took this week off, should have done the two weeks straight away and not tried to go back as I obviously just needed a bit more time.

And now, the stinging has come back full force. Wow. I have taken some more tramadol as the codeine is in the first aid box in the car, which DH has taken to work! Otherwise I would have topped up with codeine. But it makes me think that maybe it's muscular or mechanical in it's nature, as my back has tightened, spasmed completely, solid (and I had a nice hot bath after the beach) and I can't stand. I find the stinging increases when I engage my core muscles and goes straight into my feet. Do you think that the muscles being in spasm could be trapping a nerve, so if I get that down it eases and when they go nuts again it traps the nerve again? Is that possible?

It means that I thought I was on the bend, but one day of relief is not enough. Clearly. I have stopped cleaning for now.

PavlovtheCat · 30/07/2014 15:12

holidaymummy Sad ok, so it's not MNy to do the hug shit, but whatever. We are lovelies here in secret Wink some of us anyway. I am so sorry you have had such a shit time of it. How absolutely devastating but good for you that you can get yourself horse riding, we all have to do something that makes us happy even if it makes the pain worse for a little while. Mine is currently camping. Normally bodyboarding but I just can't do that at the moment.

We have not done much internet shopping recently, possibly as it's summer so we are not online as much? But, we often manage the shittiness of it all by buying shoes and boots, bags, dresses. We eat cake, again not too much cake going on recently but that's due to summer and being too hot right?

So, have some and everyone I do need you to help me find a girl's black and white 1960s/shift dress for DD. I found one on ebay, perfect, someone bid stupidly high for it and I lost it by £1! gutted as it was perfect. It's for the Beautiful Days festival that we are going to in a couple of weeks - on the sunday they have a theme and this year it is black and white. I am wearing a dress as described above, sunglasses and my black hair - 1960's mary quant. DD wants to do the same (minus the black hair). DS is a skeleton, DH was going as Beetlejuice but keeps changing his mind (so any ideas there would be helpful too!)

PavlovtheCat · 30/07/2014 15:20

cinnamon ongoing disc problems are just grinding aren't they? Sad the pregabalin that you are on (that is it yeah? Lyrica? ) is a fab drug from all accounts and most people find the side effects ease in time. I personally don't get on with them At All and have been prescribed Nortyptiline instead. Although, as much as my doc keeps getting me to take it, I just can't. I just cannot be groggy early evening and in the morning with two young children. No matter how fab DH is (as much as I moan about him sometimes I need to give him credit for taking so much slack in the mornings, I don't get lay in's any more, as he doesn't seem to enjoy giving them to me, but neither does he insist on staying in bed anymore, I do that as I literally struggle to get up most mornings) I cannot let that happen every day and I must get myself back to work next week, so I am not taking it.

I take tramadol as my main pain reliever, pretty much take it every day. When I stop, my pain increases and so I return to it's use. I suspect I am dependent on it, but as my pain is not going away any time soon, makes little difference.

Other things that help me - this bunch here. Goodness knows how I would cope without other people to talk to and remind me that shit as this is, I am not alone. And while I don't like that there are other's like me, it makes me feel less like I am dealing with this in isolation. DH tries to help and tries to understand, but I don't think you can really get it unless you are there.

Red wine is anti inflammatory. Not too much as it can clash with meds, but a glass or so here and there is ok, just monitor how you feel on it.

And, as mentioned already, internet shopping, cake work well too

Matildathecat · 30/07/2014 16:17

pavlov, last week in absolute desperation with similar pain to what you are describing in both back and leg! I took diazepam. I really didn't see how it would help since my back wasn't obviously spasming, but it did. Clearly, something was in spasm or tight and compressing a nerve. It was quite a distinct feeling,though and I'd already taken everything else I could think of.

No, no cake here, I'm determined not to put on any more weight and make me feel even crapper. Wine doesn't count due to it's medicinal qualities Grin. I've also given myself a big shake about my slackened exercise regime and have both done my back exercises and been swimming again. Long hot shower afterwards and I was feeling ok.

I love a challenge and will be onto the dress, I think dd is 8?

OP posts:
Matildathecat · 30/07/2014 16:33

Argh just lost all my suggestions so will do annoying multi posts for sixties type dresses. Need a little imagination and accessories but could work, I think.

tablet.hm.com/gb/product/36437?article=36437-B&variant=134

OP posts:
Matildathecat · 30/07/2014 16:34

Not strictly sixties shift but very cool for festival

tablet.hm.com/gb/product/36437?article=36437-B&variant=134

OP posts:
Matildathecat · 30/07/2014 16:39

Bloody hell, all links reverting to the same one. h&M have a simple black skater shift that would dolly up well and a fab black or white lace dress which is very festivally if not the sixties shift thing you are looking for. More late sixties.

OP posts:
Matildathecat · 30/07/2014 16:44

Not totally against this, again accessories required

www.clothingattesco.com/dresses/f+f-aztec-jacquard-dress/invt/ad412414&bklist=icat,5,shop,catgkids,older-girls-5-14-years,o-girls-dresses

OP posts:
OP posts:
PavlovtheCat · 30/07/2014 20:45

I love that tesco one! I think with some sunglasses, her white knee high socks and black shoes she would look the part. Yep she is 8!

Additionally, not reall6 60's, she has found some fabulous ornate papier mâché masks that we are going to paint black and white and add some black and white feathes to. Ours are beautifully grand and the boys are plain face masks, they look quite scary, sort of faceless looking!

I have a huge huge problem. I have lost my first aid bag. It's normally in the car as we go camping or out and about and, well, that's where it needs to be. It has my emergency diazepam in it, plus some other meds, not enough for anyone to get high on it, a few codeine and a few SR tramadol for spares. It's not there. Luckily re diazepam, I have a new prescription as only had a couple left (but not 'cashed in' yet), but it means I can't use them today, and as you suggested matilda I was going to take it tonight. I remember vividly when I last had it, and don't know where it is now, it's not there, or anywhere. I have looked everywhere (and hurt a billion times more than I did before having done so) and it's gone. I am not hugely worried about the children finding it as they know never ever to take mummy's medication and tbh, it is all tablet not capsule form and tastes so vile they would never get far taking it, but still, it's not responsible to have it somewhere, and it's worrying me.

And, I could really bloody do with the diazepam.

I am such a fucking airhead these days, I am forgetting so much. I was unpacking the shopping, I opened up the packet of peppers, took one out, went to start chopping it. WTF?! I was not using it for cooking, I was not even cooking, I was meant to be putting it in the fridge, all of them. It took me getting the knife from the block before I shook my head thinking 'what am I doing?!' I keep doing stuff like that.

matilda I think under the circumstances, having such a lot to deal with, I thinking taking your foot of the wheel from time to time is inevitable, don't beat yourself up about the exercise. You got to be able to just go 'arrrgh' and bury yourself away from time to time. As long as you are able to get back on track again, which you seem very able to do.

shhh i won't say out loud that i completely and utterly ignored my pain and did a bit of gardening and even got told off by my lovely portugese neighbour. Or that I am now suffering really badly for it and have a numb patch in my own personal lady garden

PavlovtheCat · 30/07/2014 20:55

how about this? do you think we could pull this off?

HolidayMummy · 30/07/2014 21:29

Confused today!

Found a new project to keep me occupied. Being horsey & having just got a new one that was abused in Ireland, I spent the afternoon watching Monty Roberts videos online trying to find ways to help the poor horse. Then put them into action & hey presto, caught him in 5 mins & not the "herding" him to move him - since then being reciting the mantra - YOU HAVE ACHIEVED SOMETHING TODAY.
Now though, getting tired & starting to "mope" & feel sorry for myself again so think I may just go to bed as I have had enough of today & hope tomorrow will be even better.
Believe it or not, I only got back from 2 weeks on holiday in Spain last weekend - aren't you supposed to come back relaxed - not if you have back pain!! That thing you can never truly escape from.
Anyway, reason for posting - Diazepam, I get through about 28 every 6 weeks & it still nearly always helps. I also "pop" my pelvis every day so my husband has to put it back in every night - we bought a cheap massage table online & then my local sports massage person taught him how to do it. That definitely helps a bit too! So let that be my "Tip of the Day"!
Thoughts go out to everyone else who is in constant pain - yes, I understand how bad it is & can safely say, yesterday was one of my worst days EVER!
x

Matildathecat · 31/07/2014 10:27

holiday, glad you are sounding a tiny bit more upbeat. Although you had the worst day ever on Tuesday, look on the bright side, you met us lotGrin. I'm not long back from hols, too and tbh, like everything else in my life, the devil is in the detail and although I thought I had it all covered, I think overall it increased my pain. Journey a bit too long, having to sit for meals etc etc. I'm very high maintenance!

Interesting idea about getting DH trained in massage. I think he'd be utterly useless, unfortunately. Many years ago he used to rub my feet when I was pregnant which was nice. Now, though, due to my super, super irritated pain/ nervous system, I don't really like being touched at all. Except my physio and Alexander Technique thatcher. Now she actually has magic hands. The lightest of touch somehow feels lovely. Your horse project sounds fab. im a dog person. Getting outside for whatever purpose is so good for blowing away the blues. My lovely dog walking friends are a fab bunch, too.

pavlov, I get tempted into the garden! too. It's soooo tempting to 'just do a little bit'. I hope your drugs turn up. Could they have got put away with your camping gear? I also have little pouches of meds around the place. The thought of being without them is terrifying. I must be an addict. Funnily, though, I don't crave them, just need to know they are available to me.

I must get on. Taking FIL to visit mil. Then I will require strong liquor!! Both quite difficult at times.

Have a good day everyone. Not sure where all our regular posters are, must be out having fun. Let's hope so.Smile

OP posts:
Jasminesoft · 31/07/2014 12:08

Ouch to losing your first aid bag with your meds Pavlov. I feel horrified for you. I hope that it turns up somewhere random for you.

Holidaymum glad that you are feeling a little brighter today.

Well I have tried to see my GP all week but no appointments until next Thursday! I was feeling quite pissed off (and sore) but the consultants secretary phoned and he can see me on Tuesday so not long to wait thankfully. It will be my first appointment with the Ortho Cons so I am feeling a bit nervous and hope that he give me some good advice.

QueenChrysalis · 31/07/2014 14:18

I finding phoning the GP helpful if you ever struggle to get an appointment of even out of the house! Did it today for nortriptiline and gabapenin, the latter is running down very quickly so asked for a higher dose tablet, not sure if they do 600mgs. I'll get a larger amount if not. I feel like a pain in the bum to the GPs. None of them seem to care and I don't have a GP who is taking me on. The newly qualified GP who tried to be in charge told me I won't be operated on and refused to let me have anything for breakthrough pain while on butrans. I am wondering if it's time to move on but I don't think there are any good GPs, especially in such highly populated areas with newly formed and crappy infrastructure - the CCG. The feeling of being unsupported makes it so much harder, always fighting for what should be a right. I know I'm not alone in fighting even if it's not the GP for others. I am feeling the depression getting worse since finding out that surgery won't be taking place this summer. The summer holidays are going to be even more tough and DH can't take off any time as we need it for the recovery. Roll on a week on Tuesday and maybe I will get a new idea of when it will happen. Fingers crossed the secretary is requesting the MRI images and gets them!

Sorry for others suffering. I have been told, a lot, to keep every day at a similar level of activity, not to over do it because I feel better. In fact I got worse doing the decorating and thought it was the medication becoming less effective, but the physio reminded me it was probably because of over doing it and she must be right as the pain settled as I stopped doing so much.

I hope the bag shows up Pavlov. Camping gear is a good suggestion, although when did you last see it? Perhaps a glass of red wine tonight if the diazepam doesn't show up. Re. the tablets tasting yucky, do you think it's purposely to put people off taking them, especially kids? Sorry random thought from ages ago and google didn't help. I share the doing random stuff, thought it was the drugs - have you started the nortriptiline? I think it's a bit better than the amiltriptiline in terms of being drowsy and I don't need as much so it feels more effective. Nights are the worst time for me usually, pain keeping me awake.

Matildathecat · 31/07/2014 14:20

Jasmine, good luck with the appointment. It sounds very obvious but it really helps me to write down a list of questions/ topics I want to cover. I'm sure your medication could be dramatically improved. It sounds as if your torn disc has dehydrated but is still causing pressure on the nerve. Anyway, I hope it is helpful.

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PavlovtheCat · 31/07/2014 21:12

queen I agree with phoning the GP. I rarely go in to see them, unless it's been a while and I feel like I ought to show my face. They are absolutely happy to call me back once they have finished clinic (they set aside an hour each day for telephone calls) and they prefer that sometimes than having someone using up clinic space that can be used by someone whose situation isn't appropriate for telephone contact. It helps that they know me now, know my condition inside out and so my GP was the one who said, a while ago, that next time I needed to speak to him about my back problem, call him instead of having to wait for potentially an hour in the waiting room for a clinic appt, as he knew standing and sitting is a problem, so if it's a condition they already know about, then they will probably be happy to call them.

I think my disc has 'gone', prolapsed orwhatever it's bloody well doing, it's now done more than before. I have all the symptoms of prior to surgery now, all the time, although to varying degrees throughout the day and probably not as bad, but the same pattern (along with the new stinging), including numb toes creeping in. It's not causing me to panic this time though, not sure if it's not as bad as before, or I am 'experienced' now so less scared/worried/anxious like before. I am much more like, I know they are not going to be rushing me into any kind of surgical procedure, or any other kind of urgent action, so no point worrying about it, just take the drugs and carry on as normally as I can. I have my second opinion surgeon appt in October (allegedly, as told this by referral team, but no letter from the surgeon's secretary to confirm it) so will wait until then.

I am going camping at the weekend. I probably shouldn't be. ok, I know I shouldn't be. But I am not going to stop the only thing I have to look forward to (camping, going to a yurt in 10 days as well, hopefully camping at the end of august as well). I have given up so so much of my life. If I can't do this one thing, then my life is properly, and truly fucked. I am aware that, doing this may mean that my winter is properly and truly fucked, but, I am willing to take that chance as I cannot wait for this to fix itself now.

Holiday glad to hear you are feeling a little better. Echoing what matilda said, every cloud has a silver lining, your worse day ever ended with you meeting this lot, so a tinsy bit of positive. I think we are all allowed to have low days, and sometimes, no matter how positive you are about things, it's going to properly mess you up, especially when you have been through such a hell of a time. It's going to take it's toll. So good you can still find a way to ride though. You got to keep a little bit of good going.

Millytint · 31/07/2014 21:54

Hello all,

Echo the frustration of GPs Queen. I have found one good ish one. But she seems to be the only good one in town so takes forever to get hold of. I needed a urgent appointment yesterday for a mouth ulcer and tonsilitis (sigh) and she decided to wade in on my back. Said if I hadn't seen the scans I wouldn't know anything about my disc issues and I just needed to get on with everything as normal. Ha! Yeah okay love.... Didn't even help with my sore mouth and throat... Anyway I now have someone to add to my list of people come the revolution.....

Pavlov .. Happy camping, red wine and a campfire would be some lovely temporary relief.

Glad you had a better day holiday mummy ... We all have rough patches where no amount of positive thinking will get you through. Thanks

Millytint · 01/08/2014 04:03

Sitting in the waiting room of the physio waiting for an assessment to start clinical Pilates ...fingers crossed, i had a brief foray into it last week and ended up laid up, but i figure if i explain what bad days are like as well as good it may still be worth it. nearly didn't make it due to dh 'helping' and draining my car battery in the process Angry but my lovely friend has stepped in!