Back Again! Back Pain Support Thread

[PavlovtheCat]

Only right I start the new one seeing as I was responsible for the last one ending so abruptly !

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

I've had a great day visiting the V&A with my friend and seeing two beautiful fashion exhibitions. Of course I am, and will be, paying for this with a hefty dose of pain. But you know what?

I don't fucking care!

Good for you, matilda! Sounds lovely. Hope everyone has had as pain free a day as possible.

I think my new left leg pain is improving a bit, so feeling more hopeful here. The right leg pain is still vicious, but at least it's vicious in a familiar way! And my legs are feeling more like legs, less like concrete blocks, which has got to be good.

Sounds like a fab. day to be worth the pain, Matilda.
I went to Whipsnade. Blue Badge got me in with my car. What a huuuuuuge difference that made. Apart from the hassle of putting my dd in and out of the car seat n straps (bit of pain n tilring), it was excellent! Freedom. Not restricted by having to carry stuff n get tired.
Walking a bit was good exercise as I ... avoid it (fear it). Loooovely day. Anyone else a member? Joined today.

Glad there have been nice days happening.

I'm totally wavering on the side of not going for the badge etc. I managed to walk to the polling station in heels, actually more comfy than my current flats. There is a shop nearby who do foot assessments, inserts and comfy shoes - all rather ugly and extremely expensive.

I'm trying to book a sports massage for the muscle tightness but not sure if it safe. I spoke to a GP and asked but didn't get an answer, she didn't say no so is that enough to go ahead? The masseuse is researching it herself. I'd be happy just doing my legs and neck no shoulders, ignoring my back and pelvis. Also, because I am now so so so pissed off with the way I have been dismissed and ignored, I asked the GP to refer me again for physio. She claimed there is a long waiting list but last time it was a choice of physios who were mostly private and saw me very quickly. I could just go private but feel I shouldn't have to shell out the £200 when they've let me down so badly - sobbing hysterically when told the pain clinic is the only option (an option I had to suggest), no back/spinal specialists, no MRI, no consultants. I ended up crying later in the pub to people I don't know very well. I got the letter to confirm the neurosurgeon appointment so at least I know who I'm seeing.

Sorry for ranting, got to take big one to nursery and then going out for childfree coffee and maybe go to the Dr to fill in the form for the physio.

queen I think I disagree with no applying for the bb, although of course it's your decision!! My thinking is that this blue bladge won't be at the expense of another person, they are not number limited, it is based on need. You may indeed have good days, so on those days, simply don't use it, then you won't be taking up a space that can be used by someone who needs it more. But, when you have bad days, you will be completely entitled to use it, knowing that you are that person who needs it more. I have days (getting rarer) where my mobility is ok. On those days I never use my badge, unless I plan to be out moving around for a while, as lt time I made that decision I parked miles away from where I was going and after walking for 10 minutes I went from walking ok to barely walking at all, and that was not good!!

I am jealous of you wearing heels!

Have read some interesting stuff about retrolethesis, which is what I have (vertebral slip backwards, rather than forwards) and it explains a lot of what is going on with my spine, makes a lot of sense re the damage and pain. Unfortunately, the downside is that the prognosis is not fabulous, as it is not simply the vertebrae moving, it causes damage to endplates (which I have, shown in my very first MRI), it creates an issue with space as the space for tendons, ligaments etc are finite and is reduced as the vertebrae is in the wrong place, and it is a huge problem re risk for cauda equine as the vertebra in particular l5/s1 is moved closer to the spinal cord with the retro movement. Basically, long term, it will cause more and more damage, to ligaments, facet joints, the disc, the vertebrae itself and the one below, the nerve, and the fascia, the muscles. Even a minor slip can do that. I thought I would feel more upset about knowing it's probably not going to get better, but I don't. I think I feel happier to have some confirmation that matches the pain, as I knew deep down it isn't going away. It also gives more credence to a fusion working, and gives me some info to take to the second opinion.

Sorry for meme me post, but some good info if anyone else has this problem ever.

I've had heaps of massage both pre and post surgery. I love it. You can completely dictate the strength etc just by talking! It doesn't, tbh, improve my pain much but it feels great and although it can hurt when she gets going on my knots and trouble spots, I do know it's helping to keep my poor old back in some sort of order. If you can get to Isleworth are or Tolworth I will gladly give you her number.

I know what you mean about the badge. I bet there are days when you'd appreciate it but it's a personal thing. I find it useful. I also know that certain people ( including my parents) can't reLly see why I have it.

Def go for the free physio. It makes me sick when gps act like they are personally paying for these services. I'm in no doubt that when his or her needs it, physio would be an excellent idea.

Sadly in the world of the back injury you need to be your own advocate.

Interesting, pavlov. I know what you mean about knowing where you stand. Not knowing sucks. At least you can try to get on with things in a realistic manner.

Have to say, surgery wise, I'd be inclined to research like mad and find the best in the country. I'm sure it makes a massive difference. Neighbour having a huge spinal op soon and going to Stanmore. It sounds hideous, rods to support his crumbling spine. They operate through the abdomen first then a week later via the back. Very, very major stuff.

I am certainly not going to opt for fusion if offered without much mre consideration but I need a real valid discussion about what is actually wrong and how fusion might help and why it might not be the best option. I have not had a frank convo with anyone about what's actually happening, it's been bits here and there and a consultant refusing to enter into a discussion other than 'fusion is not the best option go away'. The type of fusion would likely be two rods through diagonally one across between hips. I don't want it done but neither do I want this.

And if this is going to get worse and surgery won't help, I would prefer real honesty about it, about what I might expect from my future. Then I can accept it, but not what the consultant said 're stats being shit, I don't want done general all purpose stats wielded about as the don't apply to retro movement and unstable spines, they apply to non specific back pain. But fusion that is straightforward will be up to 4 months off work. Not sure that is something I want to happen right now.

matilda, I was posting on phone earlier so didn't comment about the surgery through stomach - apparently it's meant to be much easier to recover from, as it doesn't cut the back muscles, easier to access the damage as that is largely on that side of the spine so all in all much less invasive. f it goes well. However, the risks if it goes wrong are huge compared to posterior surgery, given where it goes through. poor guy though, having two ops to try and fix him

Pavlov - I really hope you get those answers, amazing what you can figure out alone with a bit of dr google., rather shocking the Drs haven't given this info before. I would've thought it would be fixable, naively I guess we think Surgeons can fix anything with their god complexes and all. I agree not knowing is pretty hard, like living in limbo not being able to plan much into the future, always at the back of your mind and feeling like life in on hold. And at the moment I'm no where near where you are, I have surgery (potentially) which I have some hope could solve everything, or almost everything.

The BB thing is partly because I feel ok, not great, but I can do it and it's hard but not too hard, but it's right that I am avoiding things I may do if I had the badge. My husband isn't convinced which doesn't help. I also realised today that I am not very good at feeling valid and sure of myself. I was thinking of applying for a voluntary thing, school governor. No specific school, just a national scheme where I give my preferred location. I should feel like I can offer things they want but don't, I've been home for four years. But I do have exp in central gov, working with the education ministers and voluntary exp with children and young people, plus the accounts exams. I will go for it, any tips on looking older for a potential interview! I've been told I look like I'm 20, probably not what they are looking for.

Matilda - I booked the massage. The lady kindly got in touch with her old tutor and a physio who said she couldn't make it worse but she will avoid that immediate area. My right leg is tight! It's in the latter area you mentioned, wonder if it's the same person...

Pavlov - I really hope you get those answers, amazing what you can figure out alone with a bit of dr google., rather shocking the Drs haven't given this info before. I would've thought it would be fixable, naively I guess we think Surgeons can fix anything with their god complexes and all. I agree not knowing is pretty hard, like living in limbo not being able to plan much into the future, always at the back of your mind and feeling like life in on hold. And at the moment I'm no where near where you are, I have surgery (potentially) which I have some hope could solve everything, or almost everything.

The BB thing is partly because I feel ok, not great, but I can do it and it's hard but not too hard, but it's right that I am avoiding things I may do if I had the badge. My husband isn't convinced which doesn't help. I also realised today that I am not very good at feeling valid and sure of myself. I was thinking of applying for a voluntary thing, school governor. No specific school, just a national scheme where I give my preferred location. I should feel like I can offer things they want but don't, I've been home for four years. But I do have exp in central gov, working with the education ministers and voluntary exp with children and young people, plus the accounts exams. I will go for it, any tips on looking older for a potential interview! I've been told I look like I'm 20, probably not what they are looking for.

Matilda - I booked the massage. The lady kindly got in touch with her old tutor and a physio who said she couldn't make it worse but she will avoid that immediate area. My right leg is tight! It's in the latter area you mentioned, wonder if it's the same person...

That's interesting about the retrolethesis, pavlov. How does it happen, do you know? Is it generally injury induced? What's the state of play at the moment re. getting your second opinion?

I've read about the surgery through the stomach, too. Absolutely terrifying, really, but I guess if you've got an incredibly skilled surgeon then keeping the back muscles working as normally as possible is certainly desirable.

Though doesn't damaging the stomach muscles leave the back more vulnerable, too? I felt it took me a long time to get my stomach muscles stronger just after a C-section, though I did have that condition where they separate in pregnancy. I suspect that carrying nearly 16lb worth of babies did my back no favours generally in the long run!

The back muscles are left intact with microdiscectomy, aren't they? I thought my consultant said that they're able to move them to one side or something, but may not have understood properly.

Hope everyone's had an okay day. Did you suffer for your day out yesterday, matilda? I've taken quite a few more drugs than I wanted to today but they are managing the pain at least. Last week nothing would touch it.

I haven't been called back by anyone from radiography despite leaving two clear & concise messages earlier in the week asking someone to call me! 'Phoned the number given on the paperwork I was handed on the day of the injection - the number it said to call if there were problems - so it's a bit shit really. No wonder they were able to say so confidently that the procedure has NO side-effects if they ensure they're unavailable to those patients who want to tell them about theirs!

loon the scar of my microdisctectomy is tiny. I was expecting quite a big scar, and when I saw the dressing I thought it was big, then my nurse friend changed the dressing (I went to stay in a yurt 3 weeks after surgery), that's how good I felt immediately following surgery), she said it was 'this big' and showed me a tiny scar. I didn't believe her so she took a photo with her finger next to it and I was like it's been one year and no issues with the muscles - they use a little mating which literally only cuts into the muscle needed, it's not pulled open, but goes straight down so the damage to the surrounding muscle is minimal. I watched a video of how it is done after it is done and I was surprised at how minimal it is. However, with fusion they can't do that, and I believe they can cut smaller from the front, and go straight in to the location, I guess due to being able to move bits and bobs about internally more easily that going through the muscle, and bone from the other side? But, either way it's not pleasant and I wish I was not so keen on knowing how things were done. I remember having a nose op when i was 18, had it re-broken and straightened after breaking it as a youngster - i sat watching a plastic surgery programme while I still had a plaster over my nose, watching how they do nose-jobs - with a mixture of horror and awe

wft the retrolesthesis, it is usual to be as a result of impact injury and it fits with an injury I had a few years ago, which I didn't connect until a MNer asked me if it could be related (she remembered my thread about the injury occurring, then later posted on a thread about my back) and it dawned on me like a lightbulb that the disc prolapse and the injury could be connected. It was not until later that was confirmed as retrolesthesis, when the surgeon said he had spotted it on the MRI, asked if I had an injury, and we talked about this incident briefly. He said it was 'more than likely' the cause, that I had probably cracked and shifted the vertebrae and it healed itself, but he can't be sure as the damage was too long ago. His theory is the prolapse 'probably' (but again no certainty) was caused by the movement of the vertebrae, either at the time and made worse over time, or over time on it's own. But, basically, I won't really ever know for sure, other than the rest of my spine is/was fine.

wrt to second opinion. I got a letter from the 'central referral and booking team' or whoever they now are to say they cannot manage the referral as the neurosurgeon team in my area have weekly multi-disciplinary meetings relating to referrals and my case would be discussed and if a decision to refer me to outpatients is decided they would write directly. I am confused as a) I didn't want to be referred to my local hospital and this central booking system is meant to give me a choice and b) I am technically not discharged from outpatients yet. So I am expecting them to talk to Mr Consultant who is going to go 'eh? I told her to bugger off!' I have made an appt to speak to my GP about it, but that is 3 weeks away for a planned appt. I can see him on the day, but that feels cheeky as those appts are for people who have a medical need at that time, rather than to chat about referrals etc. I will probably telephone him instead as he makes time for those and it saves an appt slot for someone else. I want to ask him for my MRI report etc as he will probably get it before the neuro. I will read what it says then ask for my MRI scan on CD to look at.

I might, in order to just get a chance to discuss this in detail, pick the surgeon I want to talk to and pay to see him, armed with all the info I have. I just need to find that surgeon...

I have limited painkillers today also as DD has a friend for a sleepover. They are still up, watching a scary movie, good idea DH! But, they have had hot chocolate and soon they will go to bed and chat for hours and hours i expect.

loon sorry, meant to say, that your pain has been bad this week. Glad you have a little more respite, but shite that you need the meds for it. It's the weekend so I am looking forward to a dose of diazepam to ease the back spasms that have been building up all week. Nerve pain is high this week, can't seem to get that sorted, but it's largely in my butt, thighs, then sort of bypasses my calf and some in my feet, but most upper legs, I guess that's a bonus

I can't believe how rubbish the health service is being. Have you spoken to your GP Loon, get him/her to call on your behalf? It's frightening you have to deal with this alone, but sadly so typical.

Pavlov - I really recommend the butrans. It's really helped me with no side effects, except being itchy and leaving a black square outline when taken off. I hate thinking of you suffering through to keep a clear head. I have been muzzy headed this week with the diazepam and maybe restarting the gabapentin. Plus the more drugs I'm on the more seriously I'm taken it seems - butrans, cocodamol, amiltriptiline, gabapentin and diazepam. If I could tolerate the NSAIDs I'd be on Naproxen and Omeprazole too.

tough oh that's crap at being back in the waiting game this whole roundabout of waiting, stopping, realising it's the wrong exit, fighting to get back on the roundabout, it's really bloody tiring isn't it? What did you start on with the butran patches? Do you need to top up like queen does? Do you find them better than oral painkillersI I will speak to the GP this week about them if they are gentle, as the tramadol is not really doing so much without me having to up the dose to a point I am a bit too fluffy to make rational decisions at work. Well, I think I am making them fine but not confident in them. I left a notebook at a client's house again last week, but luckily, this time, I learnt from last time and reverted back to my usual of taking a completely new notepad, and not taking my diary, so all that happened was the client got a spare pen and free notebook

DD had friend for a sleep over here and it was a success! I was nervous though! The children went to sleep at what I consider to be a respectable 10:30pm and woke at a less respectable 6:45am. I know my DD will be in bed early tonight, and the other child, not my problem after 11am! I didn't feed her up with ton of chocolate, sweets and cola though so shouldn't in bother! DH thinks that 10:30pm was too late though, he will be in for a shock for their sleepovers when she gets even older.

Glad the sleepover went well, pavlov. I'm kind of relieved this hasn't caught on with the boys in my sons' year, though the girls have been having them for years.

The whole getting a second opinion thing really hasn't been made very easy, has it? I never understood how it worked. Obviously really essential though. Impressed with how relatively uninvasive (if that's a real word) microdiscectomy sounds, but maybe I'm just trying to reassure myself. Certainly looking less & less likely this is going to resolve by itself.

It's so difficult - read something the other day saying that discectomy was less likely to be totally successful if you've waited longer than 6 months. But seriously, unless there's a cauda equina issue, who gets to that stage in the NHS before 6 months? For a start, most prolapses heal by themselves, so it makes sense to wait. Then, as we know from our experiences on here, it can take ages just to get an MRI, then more waiting lists to see consultants, etc. etc.

I haven't talked to my GP about the injection & its aftermath yet, Queen, but I do intend to make an appointment & I'll let her know. Will obviously let the consultant know too when I eventually get to see him again. It's not a great indictment of aftercare on the NHS though, is it?

Hope everyone has a good weekend - doesn't look like the weather's going to be very kind, up here at least!

loon luckily! although awake they were absolutely no trouble at all! they played ever so well and no arguments or tears! and they woke happy and had a good morning. I am sure it won't be like it with too many of them, but this girl is a chilled out girl, not too needy, happy natured.

I guess the problem with leaving surgery for too long Ishtr the longer the is nerve damage, the less likely it is the nerve will fully repair, but, in my case at least! the immediate issues of pain and completely numb side of yo foot and some of my calf and the feeling that my leg was gripped like in a vice was immediately relieved and the numb toes slowly went after a couple of months. The numbness now comes and goes and I think that is more to do with what is happening now rather than from before surgery, and the pain did almost stop for a short while. I had nerve pain for 18 months prior to surgery, got worse about 12 months prior to surgery, but severe unable to continue any more level pain for about 8-10 months when I could not use my left leg.

It is a difficult decision, because of the risks as matilda can testify, but for me it was a no brainer as I could simply not continue as I was. Despite this deterioration, I do think it as successful, as I think all this stuff happening now would be happening anyway, but with the added problem of the prolapse disc.

pavlov may I have permission to come and punch the whole lot of so called professionals who are considering your outrageous request? What a bunch of wankers. So, this lady wants to get a second opinion on how to move forwards and even get better? No. Unreasonable request. OMG this stuff makes me furious.

And how anyone unless with CA would get nhs surgery within six months is risible.

Just a word of caution if you are hoping to have a good look at your scan, it will likely be impossible as you need the correct software on your computer to read the scan. And guess what? There are many different systems. Even my Expert Witness who presumably comes up against this a lot was unable to view one of mine.

I'm very sore today. Though sore is a useless word. A scratch is sore. I'm aching to my bones across lower back and down to my left foot. Leg fizzing and only partially mine. Yet seem to have been left with a part I'd prefer not to have. That's the price of a nice day out. One that was planned to be as easy as possible.

I need to move. Or sleep. Maybe these patches are an idea. Trouble is I'm not this bad every day and it varies through the day so pills at least can be titrated whereas patches are all or nothing. I don't know.

The patches can be low level and topped up with codeine etc for breakthrough pain, you don't need the highest dose all the time. I'm on 10mcg/hr the highest being 40mcg/hr, so it's no surprise I have extra pain relief when I've been active or nights when I suffer most - nothing to distract me from the pain.

I would highly recommend amytriptiline for night pain. It takes a while to get used to but it works.

Agree with Matilda on amitriptaline. Haven't read through recent comments but it is great for sleeping through. Made me dopey and unable to look at diary etc. but DID THE JOB re sleep (and I'd not slept for literally years)!