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.

Thankyou Matilda I will write down all of my questions, I do get quite overwhelmed in these appointments. Pain management and how to look after and protect my lower back are already on the list but is there anything else that I should ask?

Pavlov have a great time camping that sounds like great fun.

Milly hope that the assessment went well that sounds like a great way to exercise.

I have been awake again since 4am and have given up trying to get back to sleep. Have got up and got some tea and co-codamol.

Quick update on DS. He has a new physio who has referred him for hydro therapy next week. She's given him a stick to walk with as this is affecting the way he wals and she's concerned about extra stress on his hip and knee. You can imagine at 16 he loves that idea. Not. But he has promised her he will use it once a day on a walk around the block. New exercises too.

GP has upped his Gabapentin dose and he has a TENS machine which he thinks really helps.

best good to hear your ds is getting good support. I rock the stick chic look. Not a look I've ver wished for but it does give stability. I use a walking pole with a bit of a spring in it which I hope looks slightly less oap than the nhs wooden stick.

jasmine will come up with some questions for you later. Basically as a surgeon, he will be examining you from a surgical viewpoint, though. Ask for all the options, risks, benefits and listen to the figures. It's very tempting to be so desperate for a cure that you don't want to hear the potential drawbacks. I'm slightly concerned that he is an orthopaedic surgeon so check he is a spinal specialist or ask of seeing a neuro would be preferable.

milly your GP sounds a real princess. What a charmer. Not. 'If you hadn't seen the scan you wouldn't know and would have to get on with it'?!!!! WTAF does she mean by that? Does she express the same to people with broken legs, cancer etc? Honestly, how do these people ever get accepted onto medical degrees? Hope the Pilates session has helped and not flared things up again.

Best - The stick may help and it also shows others that he has an injury and to be more careful/understanding. I have wondered about buying one myself but don't want to without medical advice.

Milly - not a good appointment but I hope you get the answers soon and can show her you are right, well I suspect you are. I haven't spoken to the GP who told me I won't be operated on since I was told I will be. Such arrogance and so dismissive as if anyone without a medical degree is also without a brain.

Bad spasms this morning, not sleeping and DH has the car :(

I have thought about a stick just for the signal it sends...I got rugby tackled cuddled by my friends daughter this afternoon. Yes, it hurt but I was also upset for my friend who was so mortified and yelled at her daughter who was only after all showing she loved me.

Pilates was okay, just eye wateringly expensive for one on one which you have to do a few of before the classes. God I miss the nhs. Though I did have my public system physio referral come through today. Hurray.

Yeah the gp was an idiot. Didn't even deal with the ever so basic tonsilitis etc. I wanted so much to like her, she was so beautiful and I have some super colleagues that do outreach from that practice...but never mind.

Sorry to hear about the spasms queen.... Grim

Jasmine, I have made a chronology of my whole sorry back story which I print off and give to any new specialists. It really saves them time on getting the full history and what has been done along the way. Ask him to explain the MRI to you and what different options are open to you. Ask very clearly for the chance of improvement and the chance of making things even worse. Any alternatives?

Queen my stick really helps me to stay straight and because in have a weakened leg I do stumble around. But most of all it does warn others that I have a problem. I do hate it but it helps. Very cheap off Amazon. Hope the spasms have settled a bit. I've now had a great massage and even managed some Pilates. She is so very fab, I'd like you all to go to her. Now having a long lie down to ensure I'm on reasonable form for guests this evening. I love book club nights. Such a pleasant way to spend an evening, even if we only spend a few minutes on the book itself. Hoping to sit outside as the garden is looking pretty nice and I have new comfy garden furniture. But rest first.

Have a lovely evening at book club Matilda.

Jasmine - some of the spinal orthopaedic consultants have neurosurgery qualifications and experience, it seems to cross over and hopefully makes them just as good.

I was going to use the car to buy paint but had a lazy day save for the painting woodwork and radiator in the bathroom. Will go tomorrow.

Now reeling from the prospect of a surgery date and having to cancel the meeting with the new surgeon, and sort out the logistics. Childcare is the biggest issue. Going to nursery now to pick up and will ask about swapping days or booking extra days. My head is all over the place.

back from camping. It was lovely, but really, fucking hard. I started out well, but saturday morning and my back was locked solid, there was absolutely no fat or muscle moving, it was just a big lump of brick from my sacral area right up to my shoulders. I couldn't even straighten my legs from bending! Luckily, had diazepam and that eased it lots and starting moving ok, and had a good time but now I am back I am in So Much Pain. I think this might be the last camp for a while . We have our yurt trip in 8 days but that should be ok as it will be relaxing as it's all there, and really well organised, with a bed with duvet etc, so just need food and clothing. Also, it's harder I think with so many people as lots of children, lots of mess to keep on top of, etc. It was lovely though and sat (well sitting, standing/hovering), listening to frank turner (not even my choice!) by the fire pit til the wee hours last night, not done that for ages. Didn't get drunk though, thank goodness.

Will go and read the posts.

Just wondering if anyone has experienced facet joint injections and nerve blocks. I had them done yesterday and feel worse now than before I went in. I have two ruptured discs at L4 and 5. Pain down the outside of my left thigh is horrid too. I am expecting to be in a bit of pain but wow, I was not expecting to be so sore. Can anyone give me any indication of how long this might take?

spring, I know that some people on here have had good results after a few days so keep the faith. I had this done in April so can remember it well. I had three separate nerve blocks done and it was excruciatingly painful, which apparently was a 'good thing' as it proved they had hit the spot. I'm afraid I got worse, too and went into a flare up of pain that lasted about two weeks

But as I say, lots of others have had better results. I have since been told I'm not a good candidate for injections. Which is a pity to learn after seven different injections.

Hope you start to feel better soon.

pavlov how's the pain today? Hope a hot bath, some rest and a decent dose of diazepam has eased the situation a little. Does the yurt site include an ace masseur? You never know...

spring i have not had injections yet, well, one a long time ago and it was fine after, but not a total block injection. There are a few that have, they should be able to come along soon and share their experiences.

matilda thank you for asking. Pain levels are surprisingly reasonable given how I felt yesterday! I mean, not low by any means but i was fully expecting to be completely screwed today. I managed to get into work! Late, but got there nevertheless. I have to only get through this week before I am on annual leave for two weeks, and while I can't do everything that needs doing, I can at least do some of the paperwork that needs to be done, make some important telephone calls that are not done in my absence etc. One of the line managers (not mine, she is part time, hardly ever see her, not spoken to her since I have been off sick) has agreed that I might not be able to do full hours this week, but as long as I get in for some of it each day she would expect my manager to be ok with that. I probably should have just had this week off to fully recover, but if I did that I would have been off for most of the summer holidays and that sort of looks bad. Also, I like the feeling of working hard before annual leave, you know, kind of like I have worked for it. I don't think I will really get that feeling this time, but I certainly won't feel so guilty when I go on leave.

I took diazepam through all of yesterday and think it has made a significant difference. I felt a bit out of sorts today though, and keep losing train of thought and what I am doing, forgetting words of normal work related things (like the name of a particular community order), just an empty space where the word normally is. I think it's because I have increased my pain meds a lot, and although reduced them again to a lower level for work, it's still impacting on my brain, along with the pain affecting me. It's really quite embarrassing.

matilda how are you feeling at the moment? Managed to get your pain under any kind of control, or still all over the place and higher than usual? Hope you are able to enjoy some of the nice weather. If you have any that is?!

Had nothing but lovely weather. I thought buying new garden furniture would ensure a foul summer but, no, it's been fab. Pain definitely a little better last few days, though having said that not vast amount of activity and, crucially, very little sitting.

I'm going absolutely mad with despair that the doctor who promised to write the letter regarding my Ill Health Retirement has still not done so after about six weeks. I email his secretary every week but she can't force him to prioritise a letter. I suggested today that I pay for a private appointment slot to give him the time to do it. No response yet. I'm worried that the assessing agency, ATOS ( not well known for their compassionate attitudes) will draw their own conclusions that the requested letter still hasn't been written eight fucking months since they first asked for it. They may decide the doctors think I am fit for work. Perhaps right back on the delivery suite. Why would a little backache stop me? OMG it's so fucking frustrating. It's now nearly a year since I applied. Also no news on pip and more than twelve weeks since the assessment and eight months since I applied.

Ok, rant over. Apologies for being so dull.

Wet to Howdens kitchens today. They only do trade so you have to find your own builder but the range looks nice and I imagine it's cheaper than, say Magnet. Haven't looked at IKEA, it's too much foe me although I did do it in our old house when I was young and fit!

Thanks Matilda. It's useful to hear other's experiences. Hopefully some more will be along soon.

matilda I can imagine how frustrating it is for you, it's just not good enough, that even though you paid for a private appt, where you were told he would write the letter, he still has not done it. I am still waiting for the letter the secretary told me two weeks ago that she wrote. She said today she would go and see if he had signed it yet. I told her I didn't care whether it was signed by him or pp by her, or not signed at all just get it in the bloody post today. I expect I will wait another few weeks for that too. And no letter with my alleged appt with London guy re my appt on 22 October, that may also be a letter plucked out of the air too. I feel your pain, but 8 months is a fucking joke.

I have a builder for the kitchen! Our loft conversion builder (well, the one who saved us and did a fab job salvaging a fucking mess, and although charged a bit more than many others, also saved us about £3-4k by designing a metal plate to attach the stairs to a supporting beam that had been cut through by the bodger before him, to stabilise it, as it had not been cantilevered, and got his friend who is a wielder to make it for us, only charged us £50 for the materials. Luckily he knew the building control guy and they worked together to make sure building control were happy with that, as they had talked about having to have the floor ripped back up, cantilevered and rebuilt. Anyway, he said he fits Howden's kitchens, said they will come out and design it with us, he will come over when they do this and will then quote for fitting.

I would love an ikea kitchen, but, it's more faff, involved more creativity and thinking than I can do, I will get myself in a fizz about what might or might not work, it seems much more 'diy' and it scares me.

Glad the pain is a bit lower, shame it has to involve doing fuck all to get there though.

I am a bit lot worried about my holiday. The yurt part will be good, no problems with the sleeping etc, but worried about actually doing things, going out and about, then the actual festival itself, which will involve running around after the children a bit etc. The festival guys have been great and given me a disabled parking space and platform access so if I have really bad movement and am worried about being knocked etc I can use the platforms where it will be a bit quieter but with a good view. The parking is the main bit as it means if and when we need to access the car, it should be reasonably close, other than usually when you are parked a million miles away and have to walk for 20 mins. It means we can leave some things (like picnic, top up snacks, waterproofs etc) in the car, and go get it when we need it. And can leave the site more easily. But, the festi is at the end of the trip and I am worried I might be worn out by then. Luckily it's only an hour's drive away.

So, payback time has arrived quickly today. Yesterday, which was relatively good for me, I decided in my wisdom that my garden needed feeding so carried the watering can multiple times to do this. This morning is a no move kind of feeling. My whole right side from hip upwards is locked. What a drag this whole thing is.

pavlov, the festival sounds fab. Quieter platform sounds right up my street, I don't like jostling crowds. Fingers crossed for a calmer back by then.

Kitchens, yay! Your builder sounds a complete gem. I had a quick look at the Howdens showroom though not for long because, since it is really a trade showroom it was populated by hairy men who looked slightly bemused as if a stray zebra had strolled in . The units looked great and they actually pride themselves on accessible kitchens for the disabled. I have an appointment at another local show room this morning and Magnet are coming out on Thursday. Bearing in mind this is strictly speaking hypothetical, as I'm getting quotes for my legal claim so don't want to spend too much time and effort and get my hopes up for a shiny, useable kitchen.

Drinking tea and waiting for drugs to work. Another day in the office in Matildaland.

matilda ) oh no, what a bugger. I hate that locked feeling, it causes pain that ripples throughout the rest of the body doesn't it? It even hurts my arms when I am that locked up. I hate that we cannot do simple things without payback. I am once again getting upset that there has to be so much planning in order to do things that once upon a time I would have just done, like planning my trip away. Never used to take a week to prepare, organise, pack etc. I never used to get scared about going away.

Pain is also high today. regretting getting to work yesterday. they weren't even expecting me back until after my holiday. diary had been cleared. I am meant to be getting ready now, but I hurt and am putting it off. I should though as I want to buy some donuts for a team meeting (more sitting) to say thanks for helping while I was off. I am just going to do a few hours each day this week I think. I just can't bear this. Roll on winter when I have an excuse to hibernate.

Sorry to hear that you are both struggling today Pavlov and Matilda and also that you are waiting for so long for letters .

I had a good appointment with the consultant today and now understand my back problem. My lowest disc which should be the biggest disc is very underdeveloped making my lower back stiff. The disc above has taken the strain and is torn and leaking fluid. This is what is causing my back pain. He has referred me to the pain management team to review my medication and for steroid injections.
I am feeling much happier and confident that once this flare up has passed I can carry on with Pilates and build some strength back around my lower back to protect the disc. I really do not want to go down the surgical route.
Thank you all for listening and giving me advice, you all have far worse back troubles and I really feel for you all it is so unpleasant.

Jasmine thanks for the update. It sounds like a positive meeting. I think actually knowing what is actually wrong is very comforting and helpful. I'd very much agree with avoiding the surgical route if possible. I've also found the Alexander Texhnique helpful if you can access it. I did via Pain Management.

Keep posting whenever you like. As we have always said, there is no competitive pain on here.

jasmine I am pleased you had a positive appointment. They seem quite hard to come by so it's good to hear a positive. I agree with avoiding surgery if possible, and hope the pain clinic can help.

As matilda said, do keep posting. This is not just a thread for those who have no hope, we all need some of that. It's for everyone in all phases of back pain, acute, chronic, undiagnosed, recovery and success stories. While it is great to help people find some sanctuary in the tough times, it's also really nice to keep in touch during the good times. And as she also rightly said, there is no competition or worse/better pain. We all have back pain, it's all shit, and the levels of shit varies from individual to individual and from time to time.

I have a positive! I have taken 100mg of tramadol this evening and I feel quite nice and fluffy. Pain is reduced enough that I can actually sit on the loo and not sort of squat like I am peeing outside behind a bush (not that I would ever do that, ooh nononono), but, the negative side is that I am not at all tired. My eyes hurt, because, really, I am tired. But my brain says no.

So, maizie you need to come along and keep me company as everyone goes to bed. I am going to burn some of my music onto CDs for the car, some Levellers and some new Frank Turner as the CD we currently have is overplayed. The Bad Shepards are playing at Beautiful Days, anyone heard of them? Ade Edmonson's band. Should be good fun to watch. And. They have Otter beer as their main beer. I LOVE Otter beer.

I am wondering where all our lovely regulars are? I am missing lots of you, please come back to us. I am missing our sometimes late night chats, not always about back pain.

I hope I have not bored you all away with my incessant chattering and moaning

Hope you are doing ok, and pain levels are ok?

nooooo! reduced pain, and WIDE AWAKE! More tramadol nights I am so gonna feel this tomorrow. And, DH is snoring next to me, I'm normally asleep when he gets to bed so don't wake up when he snores, but, I find it impossible to start sleep when he is snoring, especially if I am having to try and relax.

I might have to go sleep on the sofa with some meditation music on.