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.

They do Aqua Zumba at our gym. Maybe I could try and be the one pretending to do it at the back?

I bet it's good for getting the endorphins going.

Oooh, Aqua Zumba, that would be great, I'll ask for it at my gym. The music alone lifts my mood. I could shuffle about under water.

I've done Aqua at the gym and raised the average age by 20 years but I assume Aqua Zumba would be the same as all the terribly fit young people would rather hop about on the gym floor.

Pavlov, bending is terrible, although I can do the exercises for it (curling up in a ball) and do them several times a day, and after every lap in the pool.
I hope for you that the pain stays bearable for your London visit.

yay for the bedroom Pavlov! on the social front I've just given up,I can't sit in the pub, I'm not much use for conversation after 5pm.It's just the way it is at the moment. all my energy hours on work and family.

Bumping us up as it's been quiet here lately. I hope that means the nation's mumsnet tees are all free from backpain .

Just in case that isn't so, we are still around for support. I did a mean physio session yesterday and my poor old bottom is aching! I think those glutes have been given a thorough talking too.

I need a drs appointment to go through a whole lot of stuff, mostly back related. I'm wondering whether to book a double slot because I always seem to be in there for much longer than ten minutes. But is that cheeky and meant for people with real illnesses? Mine is mainly discussing things and updating. There is a lot of updating due to lots of medical assessments done via legal channels rather than referrals so GP never gets these reports.

Enjoy the sunshine everyone.

I'm fed up Cos my sciatica is back :( 2 weeks pain in the ass free is all I got .." Ringing con sec tomorrow sigh huh

QOD oh no! how bad has it returned? I hope not back to where it was?! Was it successful up to now? Completely sorted the sciatic pain, or some improvement?

I had mine done three weeks ago friday. I have had great success, but it's wearing off. I have sciatic pain again and am starting to have some trouble using right leg to drive, but, despite that, the pain is still bearable with 100mg tramadol slow release and naproxen/paracetamol through the day and trying not to top up at night. definite return of flu pain in back and legs and back pain is returning, but, bearable (funny what bearable is nowadays as I know if this was my first time having back pain this would not be bearable). It's hard to describe, but I am thinking about the pain as it returns and it's a sweet, sharp pain. Still standing straight and doing too much, and trying to pretend there is absolutely no pain at all. What I am finding though is I am much clearer headed. The intensity and relentlessness of the pain I was in was so full on, and I was either on high doses of painkillers or I was trying to cope with low levels of painkillers and needed more, that my head was so cloudy, I couldn't really do more than get through the day, I felt cloudy/foggy headed. I feel clear now, and it's made such a difference to my life to be in a better place pain wise and emotionally - I feel like I am working properly again, have had meeting with psychologists and CPNs relating to clients, and developing my interests in working with vulnerable adults - there are some new and much needed pathways for offenders with MH in the community to access better multi agency working and the links between MH and offending is becomes more accepted and recognised, there is a huge gap and they are working to bridge it more, I am hoping to get on board with it, had a productive meeting today. This would not have happened a few weeks ago, I would have just not involved myself as much. Also involved in reviewing childrens' safeguarding practices between probation and social services teams. I just feel able to be involved, and do more than just be at work at scrape through the day.

maizie was it you who said you saw pain in colours? I would love to do that, to be able to recognise as the pain changes because of the colour it 'feels'. It has a name doesn't it, putting feelings into colour? or sounds into colour? Is it the same name for both?

Exhaustion however, that's the biggest thing going on right now. I am literally falling asleep by mid afternoon, walloped by huge levels of fatigue, which I cannot shift without a sleep, and I can't always ever have! I guess it's related to me increasing my activity. I am not running or swimming or exercising but I am walking faster, walking a little more, just everything is a little faster, also tidying a little more, cooked dinner twice this week, but it doesn't feel like there is a huge amount more to show from it all, apart from being knackered! Hope that passes soon

Sorry to hear people's pain is coming back after injections - was it an injection you had, QOD? Glad work's been going well, though, pavlov.

Does anyone know how Queen is getting on now post-surgery?

Thanks loon I am not too upset about it, I was warned it might not work at all, to the point that the pain clinic tried to back out of it, and I have had one, a long time ago, that only worked two weeks, so I was not hopeful of it working this well, so I am seeing this as a bonus, a welcome bit of respite. I never expected it to be a magic cure. I have given up on that ever happening and accepting any reduction in pain as it comes for as long as it lasts!

I need work to see me working at my best from time to time. I think it re-enforces to them how back things are when they are bad, and that when I am not on top form, it's not because of my lack of ability at my job, I am just not able to give it my best because of the pain. And, after the relentless pain and inability to walk well lasts a long time I think they kind of forget who I was before, that I can do my job and be an integral part of the team. This is the time to remind them that i am that person, just not when I am very unwell with my disability. Especially when I am dealing with external agencies who just see this inefficient person who is never there, doesn't reply to emails, has no sense of urgency about anything, nothing gets done, she doesn't seem to either care or know how to do her job properly. They can see I am a professional as I am working really hard at the moment to re-establish links with partnership agencies that I work with.

Its not as bad as it was before but I can't stand it boooooo whine .....

Sec not called me back hey but I said to dh that I don't care how serious any surgery is, I'm having it. Can't carry on with this awful low level constant discomfort.
Feel like a fraud with people in pain and unable to walk, really do, it's all a load of poop innit

Absolutely dont feel like a fraud QOD it's impossible to explain to people who don't have sciatica, but it is unbearable whether or not it affects your walking. Some people have back muscle spasms which affect their walking some don't, but it is no correlation to the seriousness and intensity of sciatic or other nerve pain.

Thank you, so so lucky to have private cover and seeing cons next week now.
From what I've researched I think ablation is their next step? I'd like an arsecheekectomy

what's ablation? Next step for me is to tell me to go away 'pain management' i.e. cbt to learning 'coping skills'. Fuck that shit. I do that in my job, I am not attending one in my own time. And, I am in denial, so I don't need it.

Pavlov, what about your second opinion? Have you found someone suitable? Sorry, may have missed stuff here.

QOD, is that ablation of the disc - ie. (micro)discectomy? That's probably my next step too.

Have at last got a date for follow-up with consultant - later this month. Have had to 'phone his secretary 4 times all in all, chasing up various things. Saw him in March, was told he'd see me again in 3 months. But then it took ages to get my nerve block sorted, & it didn't help anyway, & I heard nothing. Was eventually told it was 3 months after the nerve block - but that would have been August. Was actually put through to Outpatients today & they fixed up an appointment there & then - but I'm left wondering if they would actually have got round to it had I not 'phoned? Seems a bit disorganized.

Have also torn cartilage in my left knee when I very stupidly tried running around with the boys on a "good day" earlier this week. Have done it before, same knee, & it took ages to heal properly. So now I can hardly weight bear on my good leg. Fucking brilliant.

Loon, I have a very dodgy knee too. It's too embarrassing to moan about yet another ailment so very rarely mention it though in fact it needs replacing according to the ortho surgeons. Luckily I have found injections very helpful so have them yearly after a fight each time. Torn cartiledge sounds like a rest it up situation, though. Hope it's not too sore ans if it is you have plenty of strong drugs.

QOD sorry you are still suffering. I know you are desperate to feel better but please don't just rush into surgery. I can't remember how long you've had this? Remember almost all discs will self resolve given time and self help. Being private is no indicator whatsoever of getting better care, just quicker. Sorry, I know you don't want to hear that but it is true. Listen carefully to all the options. Surgery might sound tempting as a quick fix but nothing in this life is that simple. Ok, now you can feel free to hate me .

Busy few days for me. Finally awarded my ill health retirement pension after endless delays. I'm not fully happy but have good grounds to appeal for a higher rate. Still in the process of reconsidering my pip and trying to get that slightly upgraded. All this makes me sound very greedy but the Bottom Line in that disability is expensive. Various othe stuff rumbling on but after more than a year of some of this stuff at least things are starting to happen, even if I still need to go back demanding more. It's like a form of torque, seeing how much you can take before you give in.

Anyway, the sun is shining and I've been taken out today and had a nice outing. Happy weekend, everyone.

Torture, not torque

QOD please feel free to pm me if you want any further info.

Yikes, matilda - a knee replacement sounds pretty major. Glad the injections help with that at least. And you're not wrong about the drugs!

Good to hear that something is happening at last re. pensions, even if it still needs upgrading. It's shameful that people have to fight so hard for everything when they're already coping with disabliliy / illness. Very about the way things are going in this country.

Ablation of the nerve is what I've seen on good old Mr Google
I don't have slipped discs, it's arthritis with the nerve bunched up

Oh my goodness matilda knee too? I have a frozen shoulder type problem and really should get referred but ... Sigh

loon that's awful my friend had that cauda equine whatever syndrome with loss of bladder control in May .... Finally having something done on June 17 September! Supposed to operate on discs within 12 of that happening apparently ...

Thanks ladies, I won't lie it's been bloody awful. The beaurocracy has been nearly as bad as the injury and pain. Still, I'm going to keep going because I have to protect my future. I'm lucky because I have a husband willing and able to support me but not everyone does. I bet that so many people just give up because they simply cannot face any more forms, delays and stupid excuses.

Thanks for the knee sympathy, in fact, although I am apparently 'bone on bone', it doesn't hurt all that much ( maybe current cocktail of opiates helps ). What I find baffling is that the ortho surgeons would rather persuade me, at age 48 to have a knee replacement rather than a course of provenly useful injections because research shows Ostenil injections are not beneficial to all individuals. I've been having them for several years and they do f*ing help me! Not even steroids, just artificial lubrication. Ah well, have that joyful conversation to come next month. Luckily I have a fantastic and proactive physio on my side.

QOD yes! I've heard of the radio frequency ablation. I hear it can work really well when injections have been successful? Well that's what the doctors say...Sorry if I'm a cynic. Do heaps of research and decide very carefully where and who performs any procedure. It matters. See, I told you that you'd hate me.

Hiya all, sorry have been away from MN a few days, getting stuff done, forms, etc. pavlov I visualise my pain in colour- but i think i started doing it to better know when is the right point to take something - to avoid either taking too much or too little. I only see the colour in my mind's eyc, but i haave been told that can be a type of synaesthesia - associating.but the more interesting on is whe people actually see it in frontbof themt

oops posted too soon.
Have switched to pregablin now and deffo find i have less cognitive fuzz and no tummy trouble with it yet.
Have lost 7 pounds of the" gabapentin weight" so nearly back to normal. feel like me again :)

Well done on the weight loss, maizie! Glad you're getting on with the pregabalin. I came off it in the end because I was having so many problems with dry mouth / recurrent mouth ulcers; but that was really the only significant side effect I had after the first few days. It definitely helped with the awful calf cramps I was having, & they haven't actually come back badly yet. But I'd certainly consider taking it again if nerve pain worsened.

QOD, thanks for explaining about the ablation. That does sound clever. My BIL had nerve ablation in a totally different context, to sort out a heart arrhythmia (sp.?) & it was really successful. Didn't know there was a back application too.

Are you still around, Queen? How's it going now post-discectomy?

It's decision time for me - I see the neurosurgeon again in a week & a half & I'm guessing that if I don't go for microdiscectomy he's just going to discharge me. But I still don't feel ready to make this decision. I am in pain every day, but the pain below the knee isn't quite as bad as it was. I don't have major weakness or neurological symptoms other than some disturbed sensation in the leg. It's not a big central prolapse, & I'm obviously not in the acute phase. I have good days where I can walk 2 miles + without stopping before the leg pain sets in. And I can go further after resting / taking drugs.

I don't think it's as simple for me as the prolapsed disc pressing down hard on the nerve, & so I do really worry that I'm not a great candidate for discectomy. The disc is causing narrowing of the lateral recesses & is impinging on the S1 nerve roots, causing pain & - I think - stopping the nerve puffing up to let blood get to the muscles. That's why, as I far as I can understand, some of my symptoms are more stenosis-like even though I certainly don't have true spinal stenosis. But there's a lack of space in the thecal sac.

Not sure why I'm writing all this down here - trying to get it clear in my own mind really. I'm very anxious. Was reading something by Sarah Key again & she was saying that one of her cardinal rules was NOT to have back surgery for pain only, in the absence of significant "neurological deficit". I don't know if what I have - my right leg being a bit weaker than the left, & some muscle wastage - really counts as significant neurological deficit.

The pain I get follows the S1 nerve route so precisely there's not much doubt that that's the cause of it, & the MRI fits perfectly in with that. But I can stand on tiptoe & stuff that indicates the S1 nerves are not actually damaged in any major way.

There are no other issues (yet) that I know of, in terms of endplate damage or wider disc disease. Just one totally fucked disc at L5/S1, with no possibility of regeneration, according to neurosurgeon. There's some arthritis at the facet joints at that level, but discectomy won't help with that. I also have a lot of muscle pain in my mid to upper back, but again I know discectomy can't help directly with that.

Last time I saw the neurosurgeon he wasn't very directional at all. Just gave me the options & let me decide: & I went for the (totally unhelpful) nerve root injection. I don't know how I'm supposed to weigh up the risks / benefits here. I haven't had a remotely normal life for the past 15 months, & am in some pain every day, & bad pain some days. But I can walk. After the injection I had some swelling & nerve irritation, I think, & it was so much worse - both legs in pain & walking was like dragging two concrete blocks around. I couldn't manage half a mile. Am terrified that a discectomy might cause nerve damage that leaves me like that permanently.

Oh dear, a very self-absorbed post. Sorry. If anyone does have any advice at all, it would be gratefully received. Hope everyone else is starting the week without too much pain.

This is my first post here but I read for a while over the last couple of months. I'm 6 days post a micro-discectomy after 15 months of sciatic right side pain, and it's a revelation. I have post-operative pain, and still some thigh and bum cheek pain but it's like night and day! I don't want to give chapter and verse here for everyone who has already been through this or looked at this as a possibility, but very happy to give my full story if it's helpful. I had significant disc prolapse at L4/5 and was on gabapentin, naproxen and co-codamol maximum every day and was struggling to work/drive/sleep/function. I can only hope this improvement continues post surgery but happy to shared story if helpful.
Thinking of you all struggling with back/nerve pain. It's so debilitating. :(

Casper, hello! good news that you are noticing such a difference post op. Long may it continue. We are not a very good representative group here since most of us have not been very straightforward so it's great to hear of someone doing well. Do keep posting. Do also, however, expect it to be a slow and frustrating process. I genuinely think the surgeons paint a very rosy picture of the post op period largely because they never actually see it. Unless someone returns with a major problem they must assume that everyone is doing just fine. It actually takes months even when all is well for a full recovery. ( Unless you are Ben Aislie or Andy Murray).

Loon it's a very tough call. You certainly don't sound very sure about surgery so maybe that is your answer. It also sounds as if it is a bit better than before so hopefully beginning to subside. I was at a meeting with an Expert Witness neuro surgeon recently and he did a lot of diagrams about when surgery is indicated and expected outcomes. Yes, back pain is, oddly not a good indicator. However you are mentioning leg pain rather than back pain. You have been told this is an isolated problem which is good. Eventually nearly all discs will dehydrate until no longer causing compression. The trick is knowing / guessing which will resolve and which won't. Left too long even the best candidates outcomes are poorer. So it's very difficult.

I suppose it's a question of how much this is ruining your life? Can you work? Are you willing to take the risks associated with surgery? Are there any other treatments at all that might help?

Sorry, only questions, no answers.

I should say, in case it is of help - I had classic symptoms of nerve pain right down my leg, but this progressed to numbness in my foot (which is disappearing) and foot drop. I was working (functioning -just) on a mind-altering cocktail of drugs.
I still have significant post-operative pain, but it's different. I don't have the burning nerve pain; it feels more like deep muscle pain. I'm still on the gabapentin/naproxen/paracetamol cocktail, topped up with OxyContin, but my numbness is going, and the feeling is coming back.
I had a significant prolapse/herniation at L4/L5 and had this removed, including a laminectomy. I was mobile within 4 hours of surgery, and intensive physio daily. The neurosurgeon was pleased with how it went, and I'll see him in 5 weeks for follow up so let's see what happens....
Just in case it helps anyone with a decision....

Anyone been on Tramadol, ibuprofen and paracetamol maximum daily doses for more than 4 months? Anything I need to keep an eye out for regarding side affects to long term use?

Worried about my stomach and bowels.