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.

How long should I leave it to get better before opting to have the disc shaved in order to get the best results? Been 4.5 months now.

Trying to go physio route but get the feeling from my physio she thinks I might need the op

How was the recovery? I am EBF 4.5 month old DS.

Hi Casper, it's great that you've had such an improvement after your op. - both with your pain & with starting to get feeling back after numbness. I thought that could take a long time, so it looks really promising that that's already getting better for you. Are you able to walk much yet?

I don't have foot drop & have only had fleeting numbness, so I don't think my nerve's being damaged. That's good, obviously, but also makes it harder to come to a decision. I'm also only on diclofenac & topping up with co-codamol ATM. I think my memory of pain is very short-term- don't know if that's just me! But there have been plenty of times over the past months when I'd have signed the consent form for the op. there & then, as the pain was so relentless. And then I have a goodish period, & think I can't risk the op. when I have such a high level of functionality.

That's a good question, matilda, about how much this is ruining my life. I'm not sure I know how to answer it though! Work-wise, I was only doing a bit of A Level teaching before this started - a mere 4 hours a week - & still am. So I've been able to organize my life around the back / leg problem to a greater extent than many people.

Since this all started, I've had limited commitments. I had to do the school run - walking, as I've pretty much stopped driving (one of the most painful things) - & was originally doing most of the housework, cooking etc., as DH works full-time, as well as being involved in a couple of voluntary things. Otherwise I could do exercises / rest up whenever I needed. Again, that means my life has been a hell of a lot easier than many people's, but it also means I find it hard to evaluate just how much it has affected me.

I couldn't teach full time like this, I don't think, but then I had no intention of going back to that anyway, so I can't really blame it on the back! I definitely feel a bit useless ATM. My boys walk to school by themselves now, we've got a cleaner every fortnight as I couldn't manage the housework, & I'm not doing as much other stuff as a lot of it was PTA related & the boys are at a different school now. I struggle doing anything that involves standing but not walking. Even on a really good day, when I've walked into town with very little discomfort at all, the leg pain will come on within a couple of minutes if I have to, say, stand in a queue in the Post Office.

So it does really affect day to day life, & I also feel hemmed in re. the future. I imagined I would be doing more by this stage in my children's lives. There have been a couple of things, tutoring / mentoring in nature, that have come up that I might well have applied for if it hadn't been for my back. On the other hand, I can walk quite a bit (yes, I keep going on about that! It's the thing I still have & I'm terrified of losing it) & I can sit in a very limited number of high-backed chairs / with lots of lumbar support. I've had good times since this started. DH is lovely & has been really supportive, I've managed to sit through the boys' concerts & Sports Days (with the help of a lot of drugs) & we've been on holiday. It's not all grim. But I don't want to be like this forever either.

Coldcottage, with regard to those drugs, are you on a stomach protector with the ibuprofen? All NSAIDs can be tough on the stomach lining so an acid reducing drug like omeprazole is usually prescribed if they're being taken long-term.

Loon you have done what I and probably most of us have done! which is to adapt your life to accommodate your back and reduce the risk of flare ups. I suppose only you know how much longer you can go on like this...Problem is the lack of a definite improvement or cure. It's a lot to go through to end up only a little better. And as you say, it's easy to forget very quickly just how bad it can be. Sorry, I'm not helping, am I? I'm glad you are taking the decision so seriously. It can make it hard, though when the surgeon says it's up to you. Somehow it makes you wonder how urgent the dr thinks it is.

CC, I've been on a similar cocktail of meds plus gabapentin! amytriptiline, diazepam and the odd oromorph for over two years. It is a worry in the long term but so far I haven't suffered any significant side effects other than the stupidity, brain fog and forgetfulness but they are transient and do wear off with the dose. It must be very, very difficult caring for a newborn with this pain. Even so, it's vital to treat this as significant surgery (shaving the disc really sounds quite trivial). Read back on here for some idea of what to expect both in terms of recovery and eventual recovery. Do you have back pain and leg pain? Sorry, I've forgotten the details ( see?!). Some kinds of prolapse are much more likely that others to respond to surgery. Aso, if the injection helped you can have more to allow more time for natural recovery.

Not saying don't do it, just consider it all very, very carefully. ( don't mean to sound patronising, I'm sure you are) it's just that I know too many people through these boards who aren't very happy with their results and the surgery can't be undone.

Bloody ipad and the random !!!!

Hi Loon. To answer your question re walking - I'm doing about 500m x3 times a day - round the block! I'm also tottering round the house, and up and down our stairs -15 steps. I'm not driving yet, as the surgeon said at least a fortnight.
I was functioning pretty highly beforehand, despite the problems and drug cocktail. I made myself, as I didn't want muscle loss. I was working my usual c.50 hour week, and driving about an hour each way to work too. I also have two under 5s. It was sheer stubbornness that kept me going though - coupled with the knowledge I had a surgery date. I was on 1800mg gabapentin, 400mg naproxen and 8 x 30/500 co-codamol every day. I was a zombie. A very grumpy zombie. I couldn't have carried on any longer, to be honest. I was at the end of my tether, and as the MRI showed such bad compression, and with the loss of functionality, coupled with the pain, I didn't feel I had any other option but the surgery. I know there are other options for other folks, but for me, it seemed the best way to go. I hope that it does the trick, and my improvement continues....

hiya all, will post more tomorrow but just a note now saying - well obvs i've been out tonight, posting past 2am, though i am a night owl sometimes! went to karaoke, planned meds scheme perfectly, commandered a chair, had one tiny archers and lemonade, sang (others assure me i didn't suck) and even danced a little. had an almost celeb-like status since havnt been for months due to my back. I will be knackered in the am but it was great to have a night out and socialise :)

Yes pain in leg, hip and bum.

No I'm not on any stomach protecting drugs, I was while on naproxen but when I went back to ibuprofen I stopped.

Disc is bulging at L5

I can walk but get tired and pain after a short period and really bent over. I'm better than I was, almost straight when I get up but go over more during the day. Worried how I will cope when DS starts to crawl etc

CC that all sounds like nerve pain plus probably some muscle spasm in your buttock. Horrid. If I've read correctly you don't seem to be on any nerve meds, is there a reason for that? If you have improved it still might be worth trying these plus or not, more injections. I won't lie, they take some getting used to but they really do help with the leg pain in most of us on here. In your position I think I would want to try these for a good few weeks and have more injections. Surgery is still an option after all that if things are still tough.

Sorry, I can't imagine anything harder than looking after a baby in this sort of pain. Sending huge sympathy.xx

Sorry, should have added that tramadol etc not that effective for nerve pain so adding in pregablin/ gabapentin might actually enable you to reduce that at least.

Thank you Matilda.

Can I take those while breast feeding? Guessing not as the dr hasn't mentioned them.

Hi, I hope you don't mind me joining the thread but I wanted to mention about what has happened to me since February and hope it may help someone avoid my experience.

I started with 'dropping me to the floor' sciatica in February, following the 3 year old launching himself feet first into my lower back in bed. After a couple of weeks of crying in the surgery I was finally given Gabapentin, co-codamol and diazepam. MRI showed I had L3/4 prolapse, stenosis at L4 and significant disc degeneration, physio made no difference at all other than cause the sciatica to switch sides. I am unable to work as I work from my car and am unable to drive and unable to sit in clients houses, I am a civil servant so it would be embarrassing0 (for work to have to keep moving whilst interviewing) not to mention the risk of getting stuck!!

Since February I have been ill in myself, put it down to getting used to new meds, thyroxin dose etc and gradually got worse. I kept having dizziness and nausea, having to lie down before I fell and up to last week spent more time in be than out and was incredibly weak. Last week my doctor took me off the cocodamol, because I could come off that immediately, before trying to come off gabapentin.

I literally spent Monday and Tuesday 'rattling', when I got up Wednesday it was like I was a different person, I had thought I was going blind because my eyes got noticeably worse by the day, they were absolutely fine. The dizziness and feeling disorientated had gone completely. The depression I thought I was having had lifted. I was in a lot of pain back wise until the doctor gave me a different pain relief yesterday. I am now waiting for a second MRI because the sciatica has moved, they are also referring me for T and C MRIs because I now have other identifiable points of pain higher up.

I cannot believe how debilitating this is though, I have gone from being fit and active to being unable to do very much at all and with 4 children it is cruel on them. I have exhausted my sick pay so am now having to claim benefits although still employed (for the moment). Anyway, that's me and I hope my info about the co-codamol reaction may help someone at some point.

Hi tiredoutgran - sorry you're suffering too. Sounds like there's a lot going on in your spine with stenosis as well as a prolapse, & having to cope with 4 children when you're in pain must be really tough.

What pain relief are you on now? Have you tried NSAIDs as well? I get on okay with co-codamol but don't take the full dose. I'm really sensitive to some medications & hate trying to work out what's causing what in terms of side-effects. It's the last thing you need on top of all the pain.

Has any treatment other than physio & drugs been suggested - eg. injections or surgery for the prolapse?

Maizie, your night out sounds fun! Have never done karaoke so am v. impressed. Though my boys do tell me my singing sucks when I sing along to their guitar playing, so maybe it's just as well.

I'm having lots of leg pain today, which is helpful in a way - reminds me how bad it can be. It's the deep familiar ache in lower back, buttock & back of the leg, with shriller, more high-pitched pain - if that makes sense - at the outside of the knee & into the calf. This is the classic pain pattern I've had on & off over the past 15 months. It only occasionally goes into the foot & hasn't for a while. Maybe I overdid it yesterday - walked for a solid hour & didn't get a twinge in the leg (back hurt though) until about 40 minutes in, so was really pleased. But it just keeps swinging back to pain again - it hurt from the word go this morning. Off to lie down now, I think.

The fluctuations in pain levels do make it so hard to make decisions and plan anything . When is your neuro apply loon?

maizie yay to fun nights out! Maybe not too much sitting either? I bet you are tired today. Worth it, though.

gran, you sound as if you have a lot on your plate. Have I read this correctly that you have come off the cocodamol and gabapentin? But started another drug? Sounds very brave. I think we all suffer side effects that drive us mad; sleepiness, forgetfulness, constipation, word searching and so on. I suppose it's just a compromise to find what we can stand vs how much pain we can tolerate. Welcome, however, you have found a band of people who do at least understand. Finally, I quite understand that you can't work but, like you I have to move around a great deal, wriggling, sit, stand, lean etc. I just explain it's my back and please ignore my fidgeting. It's not something I regard as terribly embarrassing or unprofessional. Back injuries are a disability and we have to do whatever makes life bearable.

I am still on 9 300 gabapentin a day, 1 5mg diazepam to stop muscle spasm through the night and now naproxen 250 3 times a day, along with the omeprazole. I have to be honest and say I haven't noticed much difference with the naproxen yet but hope it will kick in eventually.

The surgeons say there is nothing they can do surgically, although that was from the original MRI, that may change with the next one, they also say that injections won't help, again that may change for the mid/upper back pain as they are relatively new symptoms.

OMG, the side effects, like I said I am still a bit dopey but nothing like I was, I have actually been out of the house on foot in the last few days, not far but it is a start. I find after a few hundred yards the sciatica increases and if I try the mile to school I am bent over half way there. I still do the physio exercises, well, the ones that don't send me into spasm! I have regular massages, magnet pads in the top of my pants etc but nothing really seems to help very much. My sciatica is into my foot most of the time, it never really goes away. I have to be honest and say that now I don't feel so ill I am much more tolerant of the back pain but the constant nagging of the sciatica still drives me mad.

gran for your sciatica have you tried a TENs machine? Some find it really helpful. Others, like me, not. Worth a try. Lots of us are also addicted to trusty heat patches. I'm kind of longing for cooler weather so I don't feel overwhelmed with hotness, but adore my patches. Cheap ones from Wilkinsons are exactly the same as the expensive ones.

Lastly, I do find a simple back support quite comforting. Just the wide Velcro belt type. The gabapentin dopiness does improve but sadly not the forgetfulness and general stupidity.

The TENs sent me into spasm so not tempted to try it again. I remembered yesterday that I have one of the slendertone belts and am tempted to try that to strengthen my core (I am a horse rider so core function was spot on until being laid up) I'm a bit worried that that will cause spasm too but the belt will certainly give support. I just wish I could drive but think if I had an accident because my reactions are so slow then I could end up hurting someone.

I walked a few hundred yards yesterday and was in agony last night with both back pain and sciatica. I am going to try and keep going though because I need to.

I just want to moan, sorry.

I decided to go cycling this morning and I'm now paying for it with crampy / muscular pain in the lower/mid back. It isn't THAT painful but it is really nauseating. I've already taken some codeine at 1pm and now some paracetamol too.

ugh, feel a bit stupid for inflicting this on myself, I knew I was pushing myself too hard at the time. Why do I never learn to respect my limitations.

tiredout, do you know which muscles those slendertone belts target? I don't know anything about them but seem to keep reading about how it's important to strengthen the deeper abdominal muscles - transversus ones? - & not focus so much on the upper layer.

I'm in the same position with you re. driving. I guess I could do an emergency stop if I had to, but wouldn't fancy it much! The leg extended position is hard too.

Still reading as much stuff as I can find about discectomy & mulling things over. My back pain isn't so good but I've been walking well today without any leg pain below the knee - just some deep throbbing in the hip - & have done about 3 miles in two separate walks.

Reading some general guidance about criteria for discectomy & I really don't think I meet them! First one is risk of cauda equina syndrome - not an issue as my prolapse is posterolateral. Second is progressive neurological deficit - no to that too: I did have some weakness but think it's improving. Third is significant neurological deficit - no. Fourth is disabling & severe pain that lasts longer than 6 weeks. That's the only one I might fall under - it's certainly lasted long enough & it has been severe at times, but it's also been mild at times. Disabling - well, I'm not sure how to define that.

Forced DH to do raised leg test & slump test on me last night! He got my affected leg up to about 65 degrees before there was any discomfort, & most of the pain was a tugging in the back, not in the lower leg. Still positive result in the slump test, but the pain's not severe.

Also thinking that I don't meet many of the criteria that correlate with the best outcomes from discectomies. But I would like to ask the neurosurgeon what he thinks about this. It's one thing respecting patient choice, but last time he took the "these are the options, it's your choice" line to an extreme, really. I'd like to know, given his experience, whether he thinks I'd be a good candidate for discectomy at this stage. Even if he said yes, though, I'm not sure the objective research evidence backs that up.

Hope everyone else is doing okay. Are there any updates from Queen?

Hi eyebags, cross-posted with you. It's difficult, isn't it, trying to maintain fitness without overdoing it. I don't know about you but I rarely get any warning when my body's had enough. One minute I'm not in pain, next minute it's really bad & I have to stop. And I can do so much more some days than other days that pacing is tricky.

LoonvanBoon
I completely agree, I get very little warning until a few hours afterwards when the pain really kicks in. Although sometimes I just know I am going to 'pay' for something later, IYSWIM.

Agree that the delayed pain makes planning very difficult.

Had an 'interesting' day. It's my birthday but knew DH had to be up and away by 6am and not back until very late. Last night his frail old dad had to be taken to hospital with chronic kidney failure. DH stayed with him waiting to find out where he would go then at nearly midnight they decided to discharge him! He's 86 and really frail ffs! So DH had no choice but bring him to our house and I spent all morning acting nurse, emptying urine bottles and scrubbing dentures...but he was very sweet and I love hime so did it gladly and offered for him to stay as long as he wants as long as we have help. But no, he wants to be at home which is very, very difficult. Big sigh. Also several siblings so all have an opinion ( one very strong opinions). He doesn't want to go into a care home and I don't want him to die in one if that's against his wishes. Back was screaming by 11 and was sneaking in the oromorph...

But. Also nice day because did end up going for a beautiful lunch with girl friends as planned and some lovely gifts including the hugest bouquet ever from DH. But now done in and sad, so sad I can't use my nursing skills and care for lovely FIL. He's not totally dependent just needs lots of help and company ATM.

Sorry for moaning.

tired, I completely get not giving in but when your body cries out for rest I believe you should listen. In the long run you will spend less time in a bad flare IME. Don't truly believe slender tone belt will help much other, perhaps than as a support belt. Can you do some low key Pilates for the core when you are a bit more settled.

eyebags hi, don't think we've met? I have a crap memory, though. Sorry you are suffering.

And finally, Loon, it's just so hard, isn't it? Maybe ask the neuro next week what he would be advising his own wife to do in the same situation. Sometimes leaving the whole decision to the patient just isn't helpful. He has the experience to know if he thinks you will benefit from the surgery. You accept the risks but need some form a factual advice. How things have changed, a few years ago doctors were so totally prescriptive and dictatorial, now they won't offer an opinion even when begged! Good luck with the appointment.

Happy Birthday, matilda! Glad you had a good lunch & flowers. The rest of it sounds stressful & so difficult. Discharging an 86 old at midnight is disgraceful - your poor FIL. More for all of you & for you! And if you can take that with the oromorph.

The wife question is a good one - thanks for that. The appointment is a week today & I've written down various points to discuss. Will try & think about something else over the weekend!

Hi I am new on this discussion, bit about me. I am a care assistant and have been off work last 12 wks with what now turns out to be severe bukging discat l5, originally done it the beginning of July, had horrendous sciatica in left leg, couldnt put foot on floor, it got alot better then end of July I did it again ended up in a and e as my back went in the worst spasm ever, got given two doses of oramorph then they let me out. Had mri two weeks later to find the disc bulge, some stenosis due to bulge and impingement of s1 nerve, l5 nerve root is ok. Have been prescribed by my doc co codamol, naproxen, diazepan and amitriptyline. Ithad got whole lot better but today my back is so bad again, hardly any leg pain though. My physio says about centralisation and good and bad days. But I have needed paras, naproxenand diazapan again today,
please can someone tell me things improve, work are now getting bit funny, and I have 9 yr old dd to look after.

Pink, don't wAnt to ignore but need to go to bed and will reply sometime tomorrow. But yes, it can get better. And yes, surgery can help ( did you even ask this?).

Work may not be happy but this Is your health. Do you belong to a union? If so please seek advice. Of not seek advice from other organisations.

Keep posting. Sorry, it sounds awful. Hope you aren't working, it really isn't worth it. Xx

So! Seen my guy again tonight, because the face joint injections have been successful to a degree, there is an improvement, he is now referring me to a chronic pain guy for medial branch block neuropathy in the facet joints ..l ablation/Burning the nerve. So that's good!
Whilst there, I mentined I can't swim (he told me to do front crawl) as my left shoulder is so painful, it's like a trex arm with hardlyn any range ..l so he gav e me a steroid and LA injection right there Amd then, says I have impingement and frozen shoulder/ torn rotator cuff ... Possible surgery on that at some point he he he sob

He did say if I could tolerate anti inflammatories I'd probably be "cured" by now, that's why I need further intervention, my own stupid fault for getting so big that I needed a gastric bypass ...

So... I didn't tell him aabout the half marathon I completed on Sunday which caused some sort of stress injury to a tendon in my foot and is making me walk like I pooped myself .... Not a twinge of back or bum pain when doing it or after!!!