Back to Back Trouble. The Back Pain Support Thread.

[Matildathecat]

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

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.

denial it's crap that it has to be like that doesn't, the necking of meds as soon as you walk in? I finally lay down at 8pm or so, into bed, got out my little bottle of pills (codeine in a brown bottle like the olden days for some reason, better though as it has a childproof lid so I can keep it in my drawer, not up high, although probably not much longer as DD is growing up) an stuffed a handful in my mouth, guzzled water and felt like someone from the tv, on a soap or in the movies!

Hope the flare up eases a little.

k. I really, really am going to stop talking and go to bed.

Am in a mess. Head and body. Back pain back with a enhance but partly due to stress and muscle spasms. GP called me. The hospital he was referring me to for spinal surgery has shut it's doors on spinal patients. So had another two hospitals. They finally got me in one but it's private and I have already been there. I saw a physiotherapist who fobbed me off. Said I didn't have a prolapsed disc or the proper symptoms. I cried all the way home. But GP has promised that I will see a too
Spinal surgeon. I need to get answers. I am at the end of my tether. I am so low right now

Sorry you are feeling so crap. A lot of us here really understand. Seeing the dr at the private hospital might be a good thing. Shorter waits and longer consultation times? As long as you are seeing a good neurosurgeon it doesn't greatly matter where. The physio was wrong to say that to you. Hope it's not too long to wait. Can't believe that the patients in your area have nowhere to go...what happens in an emergency?!

Did you get my pm?

Also wishing you all a good day. At least we have lovely weather. One small bonus of not working is getting to enjoy the sunshine. Sure I need the vitamin D[.

to everyone suffering & feeling crap. Your physio shouldn't have said that, msdg, but it doesn't seem unusual for some physios to make random statements about your condition that aren't even remotely evidence-based!

My physio talked out of his arse too - one session it was apparently muscular, next time it was probably referred pain from facet joints, next time it might be discogenic but I "wouldn't be a candidate for surgery anyway". He didn't even test for neurological symptoms & I hadn't had an MRI back then - it seemed to be a case of "You can walk, it can't be that bad".

I can't remember all the details of your story, msdg, but I know you've been fobbed off & messed around & I'm really sorry. Can you take it easy today / get outside in the sunshine at all?

Lots of nerve pain here & upper back muscle tightness / pain. Going to start the pregablin tomorrow, I think. Need to dig out bit of paper from GP about how to increase the dose gradually. It feels scary, but I guess I can just stop if I hate it, can't I? Don't like taking things when the list of potential side-effects is so very, very long...

MSDJ - Do you have an MRI? What's all the messing around for? I saw tonnes of physios - about five and a couple of osteopaths, plus a few GPs examined me - none of them identified the disc herniation which I'm told is BIG! Try doing the single leg raise test - the leg which is more effected won't be able to raise fully, sometimes both. I'll find a link to explain, it doesn't guarantee either way but it's a very good sign of a lumbar herniation, about 70 or 80% accurate.

And I had no neurological symptoms either, unless the dodgy bladder counts but that's very minor.

Sorry work is bad Pavlov. Have you any diazepam, it sounds like a good time for that and very gentle stretching. If you can get to a physio or qualified sports massage person it will help, although I know it takes time for things to settle. Sitting at a desk will be no good at all.

I forgotten the rest of the last page. Erm I did read a cost paper thing from a trust comparing pregabalin and gabapentin, the difference is hundreds of pounds - £700plus for P and £150 for G if I remember right. I can see why they are being tough on giving it out. I think nortriptiline is a bit more expensive than amitriptiline but not such a big difference so I think I'm going to ask to go to the nort as the tiredness is going to kill me when I have to be up for the school run in September.

GP is calling today. I think I'm going to go to the new surgeon, if they allow me. DH has talked about some white paper giving me the right to choice. Urgent appointments are apparently exempt from this but I don't see how I'll be exempt when it's been a nine week wait from the referral being sent and the new surgeon is a two week wait. I assume it will be a shorter wait for actual surgery too with a private clinic (NHS funded) over a very busy London hospital, but I think I imagined that. Need to book to see a GP who isn't my newly qualified one and see if they'll take me on and champion my cause if needs be, and give me codeine.

And I really really want to believe the pain in the pelvis is nerve pain - I can feel it and sometime feel a pain down to my feet which feels connected. I really hope so. Feck. And I think I may go to the NHS physio. This private one is a bit unreliable for getting in touch and I think in part this is because I'm self paying. Ok I'll book those before making lunch for the monster.

queen I posted a long message while having my hair done earlier, and it didn't post!

I spoke about my experience of nortryptiline. I am really sensitive to nerve meds for some reason, and so I still had pretty rubbish side effects, but they were significantly less problematic than amytryptiline. I was much much less groggy in the mornings, felt much less tired, and the loss of memory, sketchiness was much reduced. So hopefully for you, it may be a good one to try, especially if the nerve pain was managed well with amytriptline as nortryptiline should work as well as that.

Also, I had horrible pelvic and hip pain prior to surgery, when I had L5/S1 prolapse the first time around, and I was convinced for a while it was something else, I kept checking with my doctor who said no it was definitely sciatic nerve pain and I was not convinced. BUT. When I woke from the discectomy, that pain was gone. Completely. I still had some pins and needles in my foot, and some numb patches, which mostly disappeared in a couple of months post surgery, but the hard pain through my pelvic and hip area, pain that made me cry and not be able to walk, was gone. I remember commenting in my post surgical drunkeness that the morphine must be pretty bloody good as I couldn't feel any pain and was told that it didn't touch nerve pain, it was due to the surgery working, and it was true as it didn't return. Well. Until now, but in the other leg.

Talking of which. The tips of all my toes apart from big toe are numb, in my right foot. I have horrendous pain through my hip again, and into my leg, and flashes of numbness in my calf, and in my bum cheek (in my bum cheeks in particular when I sit down). It's all going wrong. But. I am ok at work. I am getting on with it, with lovely colleagues (yey for my new team dynamics even if the wider picture is scary!) and as I said to my boss today, as long as I can focus my mind on the work I can be there, but when the pain breaks through so I can't concentrate then I won't be in. And for that I thank tramadol for letting me put it in a box far enough away that while I am fully aware of the pain, and it stops me from walking almost any distance, I can concentrate on a piece of work if I alternate standing and sitting. But, I have been lucky and had hardly any clients to see this week, so mostly risk assessments.

I do, however, sport a lovely new haircut, it's fab. My hair dresser was lovely and I got up and walked about a bit, and kept checking i was ok sitting. And I bought a dress from, surprisingly, sainburys, which goes amazingly with my haircut and I love it! It also had a slightly longer back than front which means I can bend over a little which is how I am standing at the moment due to muscle spasms, without flashing my knickers So, not all bad...

ms how shit is that?! sorry you are given such a run around and that your pain is not being controlled very well at the moment. I found the whole cycle of medical routes drained me so much mentally and physically and I'm sure it made the pain so much worse to bear as I did't ever feel I was getting anywhere. I still don't and back on the treadmill I wonder how much it has contributed to my increased pain, or maybe inability to cope with it as well. Although, judging by the increased numbness I expect it's more real than I would like it to be. Hope you feel a bit better after sleep. Physios are not medically placed to make sweeping statements about disc prolapses or other stuff going on, or whether surgery will work or not, it makes me quite mad that they feel they can so flippantly chuck unprofessional 'advice' out there and confuse people.

Hope you quiet lot are quiet due to tiredness after a fun or busy lower pain day, not because it's all shit for you. Hope you all had a little sun to lift the spirits.

ms

hiya =gals, trouble =with =my =lapt\op =so =cant =do/space/bar/at/all!will /stay.brief.
pavthat =good.you.have.a.much.friendlier.bunch.on =new.work.team.
haircut =fabbo,had.short.bob.yrs.ago.with.blueblack.hair.and.cut.to.be.level.with.my.chinline.was.very."powerbusinesswoman"
hope.you.are.having.a.better.day.msdj,you .sound.very.down,keep.posting =.to.share.
dh.and.kids.away.miss.them.but =great.to =totally.relax.
went.to.yoga.last.last.and =.have= .had.low.pain.day.so.hope.they =connected.
slightlyinlimbo,waiting.for.mri.results.on.20thjune.
will.try.to.do.some.painting.tomorrow
wishing.all.low.pain.night.and.day.tomorrow.

Maizie - that's a very strange laptop malfunction! What kind of painting are you doing?

Pavlov, that pain sounds awful & the numbness is not good. Would you consider surgery to fix the re-prolapse & new prolapse or is repeated discectomy not an option? I've never been clear about that but I guess re-prolapse isn't uncommon, although you've obviously got more serious issues going on too. Hope you're coping at work. I couldn't manage 25 hours & I don't think my symptoms are as bad as yours, so am a bit in awe!

Msdg, how are you feeling today?

I've taken my first pregabalin - only starting on 25mg. 3 times a day, supposedly to work up to 300mg per day. One pill & my mouth feels so dry it reminds me of the hangovers of my youth! And I feel as knackered as I did on amitryptilline. And I've only had a third of today's dose - not sure this is a v. good start!

New cleaner here today too & I feel very tense about someone else being in the house! Intended to walk into town but just don't feel up to it - school run was bad enough, leg pain is shit - so am lurking around & moving from room to room. When she's finished upstairs I'm going to lie down. I feel really awkward telling someone to clean my house even if we are paying.

en.wikipedia.org/wiki/Straight_leg_raise

Forgot to post that.

Pavlov that all sounds really positive re nortriptiline and the pain in the pelvis. A clue may be that the opiates don't shift the pelvic pain, just make me muzzy headed so it feels less and I get sleepy. It is a big shift in perspection after so long being told it was just muscular. I must've been ignoring the nerve pain feelings as they are now really obvious. It's pain I first felt in 2006 and the bladder thing since 2008 so it was probably there since then and pregnancy made it worse.

Got GP app Friday so will push for the nortriptiline and going up with patches and finding a suitable drug for breakthrough pain. It's not happening with the other surgeon, the private clinic isn't coming up as an option. But it's only three weeks and two days so no point doing anything but waiting. Although weirdly the GP decided to try to get me seen sooner and asked the surgeon to review my report today. I think she made up extra symptoms which I said I didn't have. I'd rather wait than lie. She also pushed the point about going to a&e with my report. Not what I want to do either. It's been over two years of this level of pain so a couple of weeks is hardly going to make a difference. I did say it wasn't the time to wait behind the change of surgeon, it was other factors like being someone known to the family. I also said it was how I had been treated by medical professionals that made me feel more upset and she told me to write in to complain re lying GP.

Anyway, it's so easy to dismiss how much of an impact pain has. It's also very worrying. Pavlov, I'd be tempted to go to a&e with your numbness, well I would go after all the warnings I've had. Is your GP aware? Any idea when the. MRI report will be done? Can you call the MRI clinic direct or get the GP to? I'll let you know of we do get any further with the new surgeon, I've asked DH to email him.

Roll on 20th Maizie.

Loon - I'd be the same about the cleaner and it's easier said than done to stay out when you are suffering.

Pregabalin sounds yucky, dry mouth was one of the reasons I stopped gabapentin, plus the increased hunger. I'm not going to even bother asking to try pregabalin. I might try gabapentin again once this cold shifts.

Sorry to be a whinger but pain on high alert today. Feel glum about this. Have Alexander Technique lesson later but haven't actually done my lying down exercise very much and am embarrassed to tell the nice lady that I haven't found ten minutes a day to lie on the floor. Sounds so stupidly easy.

I still get the dry mouth but I'm used to it. So many drugs so many side effects. Yes, it's a bugger that the nerve meds which do actually work have the worst side effects. Though when you have backs like ours I guess one is fairly resigned to life being extremely unfair.

And don't worry about the cleaner. You are paying her and it's her job. Cleaners most appreciate you being pleasant and polite. Set out what you want done at the start. If something isn't being done how you want or at all, say so early on because it's harder to do later on. I have two sisters who come together and they are lovely. Very understanding about my back and will do pretty much anything I ask them. Sometimes I have an extra hour to clean the oven for example. They change my bed and even put the washing on and hang things up to dry. Shame they any come once a week.

They like me because I'm nice to them, pay properly, thank them and do things like offer them clothes I'm getting rid of ( very tactfully. I've seen my old Uggs a few times!)

One thing I would say is don't have a regular routine yourself. My last cleaner was very naught about rushing through and leaving early. My house always has plenty to be done.

Also, paying in cash means that they are probably getting roughly twice what they'd get stacking shelves etc, so it s win win

I'm giving in and trying gaba for the third time. Really feeling the pain running down my right leg and under the foot. I also popped a 2mg diazepam and rubbed some ibuprofen gel on to the sacrum and SI joint area- anyone had any success with this? I'm too scared of the tummy cramps to risk oral NSAIDs, it was actually worse, much worse, than the usual pelvic and leg pain no codeine didn't touch it. I might go microwave my wheat bag and hold it in with the SI belt. This is all probably a waste of time until that 1cm of disc is removed, just masking the pain.

I did read about Cymbalta, duloxetine, anyone tried this? I think I have a prescription for it after a disasterous meeting with someone, who didn't bother to explain who they were and their qualifications or whatever, when reviewing my drugs for depression. She told me to try CBT and she wouldn't give me anything until after that despite 6 months of psychotherapy. Then she changed her mind without telling me, my GP told me weeks later I had this new drug prescribed. Well CBT was a load of crap for me but I got used to the idea that anti depressants are just not going to work for me so didn't bother trying the duloxetine. I got awful jaw clenching which causes bad headaches on two other Anti-Ds. The side effects weren't worth it.

Oh dear, everyone's pain is bad today . Thanks for the cleaner advice, matilda - this is a new experience for me! The house looks really clean now though & I want to cry with gratitude (pathetic, I know).

Hope your Alexander technique session is okay despite the pain. I had to get into that position you described yesterday, on the kitchen floor! Literally couldn't stand a minute longer - had massive upper back muscle spasms, which for some reason have become a real problem at the moment. Had made chilli & practically threw the plates & pot of guacamole at the boys & lay down! DH was late home, but he got back in time to deal with all the mess I'd left.

Queen, anti-inflammatory gels have never done a thing for me, I'm afraid, for my back or anything else. I remember trying voltarol gel a few years ago when I tore some cartilage at the side of my knee, & it was useless. Needed NSAIDs. Can't do any harm trying the gel, though.

Oh, meant to say, Queen, thanks for the info. about the cost of pregabalin! I feel very high-maintenance now .

Loon. Thank you for asking. Was ok but did a bit too much again. Too much spending but in town not online and also been doing lots of housework. Cleaned the bathroom on my hands and knees. Ironed. And sorted the washing out. Now laying on the bed in pain with a cup
Of tea and a handful of my evening tablets!!

I like Gabapentin as it's really helped my sciatic pain. But the dry mouth and extra hunger isn't nice. Are there any alternatives without so many side effects?

I am seeing my doctor in two weeks for another sick note but I don't seem to get anywhere with him. Just plied with more tablets and referrals to one place or another

Mood range is medium today so better than yesterday

pavlov your hair sounds fab! I liked the picture. I bet it suits you. Yay for hairdressers who let you stand up and also get your hair washed leaning forwards not back. Hope your day off was fab and you had a nice time with your dh Happy Birthday Mr Pavlov!

loon another good session with the Alexander lady. She has amazing hands and talks lots of sense but difficult to describe. All about balance, thinking before each action and not finding yourself in weird positions I think ( said she with one leg hooked up on the table). It's interesting and I'm hoping to also reduce my chronic and severe tooth grinding. Nobody else seems to do this so am weird. Glad the cleaner has pleased you. You will soon get used to it. Try to give her different odd things sometimes so she doesn't get into the mode of 'I don't do that'.

msdj. Firstly, what does your user name mean? I'm always curious about that. And a few others, I might add . I was about to tell you off for scrubbing the bathroom but since I'm just as guilty of doing stupid things so can't really. Can't someone else in your family help? Sounds like you have a big family? So many nosy questions, feel free to ignore! Glad you feel a bit more cheerful. Problem is getting things done makes me more positive and cheerful but definitely racks up the pain levels so it's a game of pros and cons.

maizie, your laptop has finally gone mad! Too many late night posts, maybe it's an exhaustion protest? how lovely to have a few days off. I bet you are missing them, though. I hope the visit goes well, I know it's not an easy situation.

queen if you are going to try the gabapentin again you really have to stick with it and increase the dose very slowly. The side effects improve a lot whilst the nerve calming effect remains the same. I think it makes me kind of chilled, too which is sort of good but not so good when I forget to do things and can't recall conversations. My notebook is my friend. If you are still under the pain clinic at KH I really recommend getting onto the Alexander Technique lady. She has a longish waiting list but hey, it will come along at some point, maybe whilst you are actually getting better which would be super fantastic. I've also had some counselling there which is good because they know and understand the problems of chronic pain. I've found it helpful. It's very interesting that the pain clinic employs more psychologists than medical doctors...

Ok, sorry for the silly length of this. I'm enjoying the last of the sun on my lovely new outdoor furniture.

Glad you're feeling a bit better today, msdj - your activities definitely sound too much like hard work though! Hope the ironing wasn't too bad. I have a good ironing board that stands at the perfect height for me, but still struggle with ironing because standing still is so hard. DH is doing most of that ATM.

Glad it went well with the Alexander lady, matilda. Do your teeth grind all the time? DH goes through phases of doing this at night - will do it several nights in a row, & then just when I'm plotting to murder him will stop for months. Very odd!

I've somehow missed the pic. of your hair, pavlov - will look back. I had my hair cut a few weeks ago & my neck really hurt afterwards. It doesn't usually - my pain seems to be spreading! I'd prefer to lean forwards over the sink, certainly.

Well, I don't feel any worse after 3 pregabalin than I did after 1, which is something, I suppose. Still enjoying looking round the lovely clean house .

I use my ironing board for present wrapping, too. It's the perfect height.

Hi ladies, I am new to this thread and have quickly scanned it over. Hugs to you all! I feel I am going to find more time (somehow) to go back over it all in more detail!

I am now 48, I work in child care (pre-school) and I am carer to my disabled daughter. I suppose it was only to be expected that my back was going to suffer at some time.

I have had niggles and twinges in the past but back in October I came down with a flu like bug and I have never really got over some of the flu like aches and pains, constant feeling of congestion, croaky voice comes and goes. (but child care does put a strain on my voice too, all those silly voices and changes in tone!) Around the same time I started suffering from severe lower back pain.

Doctor referred me and I had an MRI back in November which came back clear. Nothing that wasn't expected in a woman my age I was told. I was told it was all stress related and was given co-codomol (sp?) At this point I was in absolute agony, not just my lower back but joints all over my body. I resorted to take the pain killers but after a few days I felt really light headed, scared myself and stopped taking them.

I was supposed to have been referred to an NHS physio in January but unable to move, I resorted to paying privately for an Osteopath. She is great and has helped tremendously but I need more regular treatment than what I can afford to pay for.

At long last, this morning, I saw a doctor who actually listened to my symptoms and took them seriously. I have a long list of blood test to get done as well as a urine sample and chest xray! Fibromyalgia was mentioned as a possibility but obviously test results are needed before any further advice given.

The general aches and pains have improved thank goodness, although they are still there they are not as intense as the were at the beginning of the year. I am trying to find time for the exercise my Osteopath has given me to improve my core strength and I am also trying to cope on basic paracetamol. Carrying out the most basic of tasks is just becoming impossible!

Sorry for the waffle but any other advice would REALLY be appreciated!

Hi Dingle, sorry you're in such pain - you obviously have a lot to cope with too. It does sound like you're suffering from something systemic, not just to do with back mechanics. I'm guessing they've taken bloods to test for inflammatory arthritis & similar conditions.

You obviously need something more than paracetamol to help you get through until you know a bit more about what's going on. It might be worth trying the co-codamol again: side-effects like light-headedness wear off quite quickly for many people. Has your GP suggested any anti-inflammatory medications, like naproxen? They can be very helpful but should be combined with a stomach-protecting drug like omeprazole.

Heat can be really useful too - many of us here use stick-on heat patches when out & about, & hot water bottles / wheat bags at home. They can relax & ease sore / tight muscles.

Hello Dingle

It's great your dr has started investigating things, getting an MRI can be difficult. There are a few of us with nerve pain, mostly disc related at some point but there are cross overs with things like fibromyalgia in terms of medication. Amitriptiline is the usual for nerve pain at night and then there is gabapentin and the more expensive pregabalin. Some opiates are good too and have less side effects once you get used to them. Try one cocodamol 8mg plus one normal paracetamol so there is much less wooziness. The drug I mentioned above, duloxetine, is another nerve medication. And there are of course heat patches which are loved here but I'm not so good at doing it as I'm lazy. Keep plugging away at getting all the tests and examinations because finding the cause is half the battle.

Oh and there was something that rang a bell about getting ill - someone mentioned anti biotics used for lower back pain as some back pain may be caused by an infection. Might be worth a google if no one else can explain it properly.

Matilda - I know I have to give it a good try, I will speak to the. GP as it maybe due to going up in 300mg increments which may be far too much and too quick.

I spend far too much time window shopping online. Really struggling to find nice tops at the moment. They are all unstructured and unflattering!

I hope everyone sleeps well and the aches and pains bigger off!

Hi Dingle, I'm too tired to post but will tomorrow. Hope we can help you a little even if it's just emotional support. Try to read back a bit if you have time. The earlier threads have sooo much info in them. We have all learned the hard way,sadly.

How old is your dd? And by the way < I'm 48,too>