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 - glad you are no worse and let hope you do get a bit better soon - how long did they say it can take to kick in?

Pavlov - nortriptiline - I am a bit clueless but I found 10mg didn't help me sleep so I'm on 20mg and I'm still struggling with waking and getting up, even if I take them at 5:30pm. I'm not convinced of it's power to get rid of nerve pain, just the power to knock me out.

Matilda - was your original op for a central disc herniation? I know it was L4/5. I'm struggling to find many cases of central herniation and many are CES related.

I've started watching surgery videos which is interesting. Lots of the US stuff links the disc removal with fusion but I'm not finding much that's helpful on the laminectomy, they just brush over it. Although I now realise I can't ask for the bone as a souvenir as they mash it all up with a drill and then remove. No wonder they can't put it back as I asked!

My right thigh muscle (top) is in spasm! Or, I think it is! I didn't realise it, but the muscle seems really 'well toned as I sit feeling it. I notice it the other day, thought 'ooh I am not as unfit as I thought, how did that happen!' But, it's solid to touch, and left leg is not like it. Correlates with the huge increased pain in right leg, so guess that explains it, it's weird! Can ligaments spasm or tighten? Or is there muscle around the ligaments of the knee? Now I am paying attention it's solid right to the knee. When I press it, my toes go numb, and what I thought was the nerve, hurts, it feels like nerve spin but maybe it's the muscle? And it hurts my back too. So odd, never noticed that before!

Anyone else had that?

queen pain clinic guy did say it should help me sleep but 10mg did nothing for sleep at all, but still messed me up daytime. Dint get any of the good stuff. I thought ami was fab for nerve pain, sorted it out almost completely but completely threw me side effects wise, had to stop driving, lost so much weight it was not good. And combined with other meds, I had an experience of constipation so bad I didn't go for 8 or more days. The process if dealing with that was traumatic!

queen, it was a broad based prolapse, more left than right. Trouble is different radiologists do use different language. So not sure if it's the same as central. I didn't feel the same urge to google surgery clips tbh. I wasn't told laminectomy, just 'I will trim up the bone', which sounds quite minor. Decompression must equate to the same thing and as you say they do use a high speed drill so it's all very precision and small. Try not to stress too much about it. You know you want it done and at some point have to surrender to them and hope they deserve your trust.

Matilda - yes the language is confusing. Trimming sounds more the usual thing I have seen, complete removal does sound scary, it is the one point I'm shaken by. Although not in a big way, I'm happy to go with that although I will ask questions.

Pavlov - both my legs are tight, especially the quads (top of thigh to above the knee), I even get twinges where it's pulling at the knee. It may be spasticity from the nerve compression or from those muscles over working to compensate for others not working so well. In my case (according to the physio) they are tight because the bum muscles are weak due to the pain nearby, although I wonder if the nerve compression is weakening the bum muscles - the L5 nerve is connected to some of these muscles.

Ami didn't help me either, except to knock me out and zombify me if I took it too late. Such a shame if it did help you that it was so awful with side effects. Constipation sucks, I think the medication is starting to get to me and I might need lactulose more.

I'm really sore tonight. We went to a picnic and sitting on the floor wasn't good. I might have a look for a folding version and I saw some toilet raisers, anyone have these and recommend? We also cleared the hall way in anticipation of the builders.

queen you will get a toilet raiser from physio after surgery, although, if you need one now, worth looking at getting one yourself. Are you seeing a physio now, don't think you are, but if you are, ask for one now, they might be able to provide one. I am amazed you can even sit on the floor. I would think it's not great, so not surprise you hurt more.

We have these little low chair type things, recommended by someone else on here, although we have the cheap version that DH found in wilkos. They are reasonable, if you can get low down, especially when I nick DH's and use it to rest my legs on , not great on the beach though, as we found on on friday and I sank and fell forward sitting into it! although what I actually want it a recliner chair, but, much less portable than these low ones! I can't sit on the floor at all, as the pain in the back is horrific, feels like my spine is being crushed, and more recently that position of sitting with legs straight out but having to sit upright causes my foot to go numb, which is why the chairs work well as I can lean back (they are at a slight angle) and rest legs bent at the knees.

It's not a tightness in my thigh, well I guess it is, it's rock solid, rigid like I a clenching them. I have noticed that I have no butt muscles any more either, someone else said that up thread, flat butt, I have that now, used to like my butt too, well toned, well shaped, now it's the equivalent of droopy boobs I expect! Could so with some spanx just to hold it back in place got some numbness in my groin area, but had that before and docs not concerned. DH is quite annoyed that hcp don't consider numbness in any part of the body worrisome. I reminded him this is all my nerves thinking this is how to react and not actually anything happening for real he, like me, thinks that is a load of bollox (not generally, but in this case).

I have definitely done too much, but despite the leg pain, been really productive. I have washed every single white item of clothing and bedding in the entire place, and hung it out on the line. Unfortunately a seagull or two decided to crap on my final load of washing, fuckers, but even they are done and out again drying. Left DD's white/grey socks on the airer in full sun for 2 days, they are looking whiter doing the same with all the pillow cases as DHs pillow cases have gone faint yellow, how is his sweat different to mine? . I have also put all the washing away from the zillion loads I did today and the stuff two full baskets full hanging around from before then found a full load in the tumble dryer (I almost cried). I paid DD £1 to help me! She earnt it, but not without a bit of moaning along the way! I also sorted out the camping boxes as DH has not progressed hugely further than washing it all and putting it all back, but left boxes lying around and sleeping bags on stairs. He is not a finisher. So, I am now pooped!

Hope you all had a good weekend, sorry to hear of those in increased pain.

I think it was me with the flat bum, for the reasons above. I want my nice bum back. I actually got some spanx type things yesterday but not bum ones really. They really helped support my back, I felt a significant relief when on, but should only use when I'm walking or doing active stuff like laundry ;) still got to keep pulling in my tummy.

I have physio with the NHS this Friday for the first time for a long while. I will be asking about support post surgery and equipment. I think I'm amazingly lucky to be so well, it helps that since the MRI I've pushed and got better pain relief, the pain causes spam which causes more pain. But even so the disc is huge and I should be worse. I was shifting around a fair bit while sitting but like many things, I am paying a while after.

I am shocked you have all this numbness and they aren't bothered. I would be quite scared too. I hope this choose and book things is sorted for you soon and you get to see the right surgeon.

After a few really quite good days, it's over. Back with a vengeance.

Trying to deal with important paperwork and get stuff around the house sorted as we are having work done. It's crap.

Sorry for the mememe post. Hope others are faring better.

Sorry to hear that, matilda.

I thought I was getting somewhere with the pregabalin, too, but have loads of nerve pain today. Dry mouth getting worse & worse, annoyingly.

Trying to avoid too much time sitting with laptop in favour of more lying down - not entirely successfully.

Try supported semi recline with cushions under knees. Then balance ipad/ laptop on a cushion on your lap. No sitting. It is banned.

Hi all

Sorry to hear you have gone again Matilda ... It is so disheartening.

I am hoping for a good week ... Am child free and driving free until Saturday so should be able to take pregalbin every day ... Unfortunately there will be a lot of sitting, but hey ho.

What kind of upper body support do you use in this position, matilda? Do you just have pillows under your head (& knees), or are you propping up your whole upper body somehow?

Hope things are a bit better today & that everyone else is doing okay.

Sorry things are not good Matilda especially after a good run. I often find it worse to cope with for a few days after a flare up post good days, Moreso than when it goes from bad to really bad. Not helped by having lots you need to focus on.

loon I prop up with lots of plump pillows, have a a wedge pillow under my knees then prop the laptop on a pillow on knees, I am clearly far too addicted to the internet!

Should be working. Instead I am eating a bacon sarnie and drinking coffee at my desk. Also having a flare up post few days good/excellent run. Horrible flu type pains in hands, arms, legs, all emanating from central point in my spine, headache, feel hot. It feels like toxins in my system, widespread but I am certain the start of it is the lower spine. Back is stiffening so I know how it's going. It is flu like but it's not flu. I feel shit but cracking on at work pretending to work

Ah pavlov, that's not good. Hope you are able to rest now. Feeling worse is horrid. I almost wish it could just be the same all the time, at least I would know than. I was secretly amazed at feeling that bit better. Oh well, at least it's possible.

Going on hols next week and the journey time is much longer than I anticipated, like 12 hours in total from door to door. I'm planning on taking vast amounts of drugs including diazepam which I almost never take.

Having said that I met with my Pain Group buddies this morning a chap there was admitted to ITU a few weeks ago. He was using his morphine patches and usual meds but got a kidney infection (didn't realise) which meant all the toxins built up and he effectively overdosed. He was really lucky to survive. Scary.

loon, yes, a mountain of pillows and cushions, especially lumber support. I have nests built all over the house like a little mouse.

matilda poor man! Guess that's a big problem with painkillers masking other symptoms, would cover stuff like kidney infection, esp if still having lots of pain. Where you going on holiday? Hope the journey is not too traumatic.

Got through work. Feel like poop. Headache I am hoping is linked to possible storm brewing and will clear, but am incredibly thirsty, and fluey pain really getting me down. Spine health boards have some discussions about flu type pain being linked with spine/bone infection, and end plate pain can be linked with infection, so possibly something in that. Apparently it doesn't always show in bloods til quite high levels and doesn't always show on MRI, best shown in ct scans, not sure what they show that's different. But it could explain the end plate inflammation on the MRI. Not sure where to go with it, surgeon and pain clinic peeps never let me get past a vague description of my pain symptoms and then switch off as knowing it all already, cut across me to go on to tell me what's causing it, before I get to the flu symptoms bit, and then it gets left. GP said it's all lie do with my back, but has never gone into detail of why Other than a reaction by my body to long term pain. So I will go see my GP tomorrow, to get him to do the referral again for specific surgeon in London and to add this'd to my record as being a problem again. Thing is, chances are by the time he does bloods, any inflammation will have subsided as it seems that I feel terrible for a few days, then the flu symptoms calm down, leaving me with longer term back pain. I think this runs alongside the disc issues and pain from that, rather than the cause of it, as the pain from this is different, but connected still if that makes sense - two separate issues, but likely one caused by the other, or linked with the other at least.

That sounds awful, pavlov - it must be frustrating not knowing exactly what it is. It does sound like they're infection type symptoms.

Makes me think again about that news story re. treating persistent back pain that hasn't responded to surgery with longish courses of antibiotics. Has a standard antibiotic protocol been developed yet? Doesn't sound like it's even remotely permeated the back "establishment" yet.

Have ordered some nice firm pillows from John Lewis. I use one as a head pillow & it's fab, really supportive, & am getting more to go under my knees & help me get into a comfortable reclining position.

Up to 75mg x 3 of pregabalin now. Dry mouth still the worst side effect - I've got over the excessive tiredness completely. Had a really good day, after waking up in pain - weird. Have done lots of walking & only had minor stinging sensations in bad leg. It's not so good now, but I enjoyed it while it lasted!

This is mad, you've been reporting these symptoms for ages! Can't your GP give you a form that you can take to the blood drop in. Service when you feel it building up? Otherwise it's hopeless. I do hope you get your referral. Ask the GP to write clearly that you have researched this and do not want the local 'decision makers' to disregard it and send you to OT/Speech and Language/ the local hairdressers instead. You would like to see Mr X of London as is your right to do. If it's NHNN then it's a national referral centre and many people in your situation are seen there.

I'm soaking up the last few rays having wasted the best of them fiddling around inside. Also watched Murdered By My Boyfriend from BBC3 Catchup. Should be compulsory viewing for all those working with vulnerable groups and probably all schoolgirls. Tragic.

Hope others doing ok.

Where are you going on holiday, matilda? The travel sounds tough. Is it mainly in the car or will there be flying too?

We used to drive into France on holiday quite a bit - did the overnight ferry crossing from Hull to Zeebrugge, which the boys love. Haven't dared plan much this year - we're just going to Northumberland, to a cottage we've been to before (great bed!) & the drive isn't far.

loon the AB treatment for back pain is licensed in UK and is used, but it seems it's not used widely. It is my understanding it has to be a trained physician within the field i.e. surgeon (has been cited as someone who would use it) or other specialist consultant, rather than a GP. I think, as matilda has said, that going to NHNN will be a potential breakthrough for me in terms of accessing more 'controversial' and less used methods for what seems to be something that might be out of the depth of those I am seeing so far. Not to be disrespectful to them really as although I am not happy with Mr Arrogant, he did, it seems, a good job on the disctectomy, but doesn't have the experience or knowledge or inclination to think outside the 'I will fix it in theatre' mentality. Where NHNN will, hopefully have come across people like me in their hundreds/thousands and won't consider AB treatment as unusual or controversial. It is frustrating though, my GP is lovely but, he doesn't have the drive I think to go that extra mile. I asked him to test for my inflammatory markers and he had to check if he had done this, which I had thought would have already been routine with people presenting with certain complaints/symptoms such as back pain and lethargy and fly symptoms etc, and he didn't test for the right markers that I can tell, but can I tell him he hasn't? he is the Dr and I have not got over the notion that he should know more than me about this, and not wait for me to direct him to what he needs to do.

I find matilda that, as articulate, clear in my views as I am that when I go the GP I turn into a child and find it difficult to say what I want to say, I feel silly, like my symptoms said out loud are not that big a deal, as otherwise they would be addressed by now, and i also feel like a bit of a hypochondriac saying 'and this is wrong and that is wrong' and I don't like coming across like I think I know more than him by spouting stuff from Dr Google, but, I need to get over that, and tell him. I need to write it down. I will try and do that in a minute.

I am such a home body these days. The thought of travelling far scares me. I went camping literally less than 45 mins from home (more going out as we got stuck behind a tractor then a cavern who appeared lost but just over 30 mins on way back). And our main holiday is just over an hour's drive away. But, we live in a city and so countryside stays are just as lovely 1 hour away as they would be if we travelled to another part of the country. And we live in such a beautiful part of the country and so many part of it I have not visited yet so it's lovely. But, I am aware there are some beautiful parts of the country that I have not seen either, and I really want to spend more time in the Cotswolds and Lake District. I also have family up north I need to visit but have not due to distance to travel. Dh's mother really wants us to visit her in New Mexico, she has a lovely big house in Santa Fe, lots of land for the children to play in, skiing not far away, lots to do, but, as wonderful as that sounds, I put it off this summer! How mad is that?! Flights paid for, for the whole family, but it will take over 24 hours to get there - travel to heathrow, flight of 12 hours, another flight of 2 hours, car journey of 1 hour. With two young children and me a nervous flyer with a bad back! I shall stick with 30 mins away from home

Good to go back to a place you know is ok for your back loon, it makes a holiday so much easier if there is not so much unknown when we have a chronic pain condition to manage.

Sorry people are having a tough time. Half the time I feel ok and the other half, usually in the evening or the middle of the night, I'm so sore. Having the builders in I'm having to be a bit more physical and very carefully supervise the kids. So I was sore in the night and hardly slept after being woken by DD1 at 3am - she slept in my bed while DH slept on the sofa as he thought there was less dust from the building work in there. Weird and I suspect it was in his head, everyone else was fine and I'm asthmatic so gave him my ventolin.

The anti b stuff is interesting. The end plate change on the scan was really big and obvious and there was no injury as such, just gradually getting worse. I also wonder whether the annulus fibrosis can regenerate. There's lots of potentially pseudoscience out their talking about them regenerating when in certain positions - traction type stuff. I hope the London referral can cut out the crap and give you a real chance Pavlov.

I also have the feeling like a child thing but less so now with the medical professionals now I realise I know more. But I still feel powerless if they say no and start doubting myself. Plus they can be so arrogant, it's better if they admit they don't know rather than pretend they do and I'm wrong or whatever.

On the inflammation blood tests, I had it done after the pain clinic visit. No idea about the result but it may have been done because I said I'd fainted a week or so before hand - no other reason and both kids were in the room with me.

Finally spoke to my GP on phone. I didn't go into details about feeling unwell, I am going to a specific appt for that, didn't want to talk about it over the phone, that's a kind of need to see in the flesh kind of convo as he might want to take blood pressure, temp and whatnot. Anyway explained the issue with the referral team, and he was pleased I made it clear to them I thought they were passing the buck by blaming him! However, he is ahoy to do the referral the named consultant at NHNN today and mark to for urgent attention of the manager to get it booked ASAP. He was very impressed with my choice, he said that NHNN is the best hospital in the country for neuro related issues, it's reputation is excellent, in his opinion, And that his wife used to work there on the neurological side. He fully supports my choice and seemed genuinely pleased I had chosen that hospital.

We had a chat about the pain clinic guy, who has written to my current neurosurgeon asking if he is sure about the decision to not explore surgical route, and to review the most recent scan/X-ray. and my GP thinks it reads as though he sounds unsure about the surgeon's decision and basically asked the surgeon to give a further opinion. I said the pain clinic guy talked to me about 'accepting' the decision of no surgery, and GP agreed that the London hospital will fully explore until there are no other options and so until that happens, I should not 'accept' that I will not get better than this.

I feel happier now it's done. Still feel rough. Maybe I just have a bug. Have slight raised temp, hands hurt. However have been reading some interesting (and scary) stuff about Discitis and oesteomyletis (sp) which really fit my symptoms and MRI presentation. I am doing DHs skull in with my determination to diagnose myself. He think is am just going through lots of potentials, where I think I have looked at a wide potential inflammatory issue, concentrated really hard on recognising my symptoms and narrowed it down to what I think it possible. And I definitely, definitely, think I have two things going on 1) disc problems, degeneration/prolapse/facet joint etc and 2) something inflammatory, either AS or an infection.

I am thinking, as soon as I get to the big shot in London I will be sorted, but firstly don't want to pin my hopes on that and secondly if I keep feeling rough like this might not be able to wait that long before asking my GP to start testing for infection.

Oh, that's really good news about the referral, pavlov. Well done! Sorry you're still feeling shit though.

That's good news pavlov, maybe you can post the name of the consultant at NHNN privately? I do hope the waiting times aren't too awful but even if they are at least you will be working towards something. I have to say that you have mentioned these gluey/ bug feelings so many times, I'm wondering if you even see just what a striking pattern it is when it's actually you iykwim? As a bystander it's so striking and regular. There has to be a link.

We are off to Turkey. We have a ahem, special anniversary whilst we are away. Did finally manage to get a nice card today. So it's an hour to get to the airport etc, two hours at airport, five hour or so flight then a long transfer. Have booked a private transfer so hopefully we can stop if necessary. I'm thinking diazepam and tramadol.

good news here today too.I get to try the anti tnf drugs do long as consultant can get funding. Eto be about six weeks