The Back Story

[Matildathecat]

Hi to all fellow back sufferers. I've been on Spooning for a while but don't really feel I fit as I'm not actually ill, just have a chronic (and permanent) back injury. So please post here, no niggle too small. We can share experiences, tips and moans!

Quick history, age 48, last year had sudden crippling back pain eventually diagnosed as disc prolapse L4/5. All conventional treatments tried and failed so had micro discectomy privately.

No progress, and much worse leg pain followed. V long story short was finally seen by second neurosurgeon who diagnosed severe scarring around the nerve root as a result of the surgery. Poor outlook for surgery but we gave it a go, so had second op with similar lack of progress and final MRI showed even worse scarring. Only option chronic pain management . Had several injections with not much effect...

So, permanently disabled, use a stick, endless drugs and a lovely blue badge. Along the way dismissed from career of 25years for ill health.

Sorry, it's a grim story, but hey, I'm ok. Not depressed, have an okish quality of life with the help of my fantastic husband and friends. I walk, albeit slowly and not far, swim a bit and can please myself. Luckily my boys are young adults.

So come along and share. Moans and groans ok, tips and recommendations welcome.

Just don't tell me to see your lovely chiropractor, I might just punch you!(wink)

goodness, this might raise a tiny smile.

m.youtube.com/watch?v=MXzaVOk_Ydk

Hope you are with someone. You do not need to write any more lists. The family will be fine. So will you. You are very much on my mind.

And scone, too if you are reading.

The Back Girls do get it.

Still thinking of those who have surgery today. Positive vibes for the best outcomes possible.

For everyone else, hope low pain levels and Going Steady. Increased leg pain here, it is clearly linked with the deep pain in my spine, that keeps 'going', I thought from yesterday's reduction it was on the mend, but perhaps not. GP has MRI results and it appears the disc is not prolapsed but dehydrated. And there is a bulge at another level, can't remember what, either l4/5 or l3/4. Anyway, absence of prolapse at the level I thought bothers me as I know something is wrong there I can feel it! it really hurts. But I didn't have MRI with contrast so nerve issues won't be highlighted. I have read that dehydration can cause severe pain but I am anticipating he will just discharge me and leave me to get on with it and continue navigating the rest of the messy NHS system trying to find someone who knows what is going on. Consultant was clear, if prolapse he can do more to fix it, if not he can't help any further. GP said wait to hear from consultant re outcome and he needs to see the report alongside the MRI scan pictures themselves and GP read the results as saying there are still issues but he doesn't know more without the pictures. There is no report as such, just a handful of lines, guess that's the report. Seems less detailed than last time. But, anyway, feel reall tearful as I know it's going to be that there is nothing wrong enough to actually doing anything about. I feel so unlistened to by the medical professionals now, it's gone on so long. I feel like a fraud and maybe this is all in my head and maybe I am a bit crazy, feelings things that aren't real. And the thought that this is in my head makes me so upset as I know it's not.

And GP said nurse view of stopping naproxen was uncessary, he raised his eyebrows when I told him her expectation that I stop this in time and certainly reduce. Anyway, he is doing full bloods as I have a few other things going on that are probably being rundown or perhaps due to meds etc but he wants to check. He said that providing bloods come back ok and no issues relating to naproxen to just carry on taking it as normal for as long as it is working. So, even he thought she was a bit odd with her advice. He also doesn't see why I can't have the injection.

Sorry, didn't even intend to rant especially with some of us having horrible surgery today, I am actually lucky. Jus sort of all came out.

I am going to go to the gym today. Fuck it. Fuck the pain. My dd said to me yesterday 'mummy, when is your back going to be better? I really want us to go running together.' One day baby, just going to take her a little longer. 'Five years? I will be much bigger then'. It might not ever be 100% better but it will get better than it is now' 'but we can go running though?! Or at least bike riding?' I hope so darling. While trying hard not to cry as I don't even know if this is going away as it surgery has fixed it, it ain't going away by itself, nothing I am doing is working and no one else has any real ideas on what to do now, or is in any rush to help, so. I shall just get the fuck on with it myself and pretend there is no pain.

pavlov

You need a plan.You need to pause, regroup, get copies of everything and then you need a kick ass plan. This guy is only one surgeon. The pain nurse is only one person.We need to help you identify the best people and then you need to gather your energy and persuade your gp to refer you to them. Don't give up.

denialandpanic I know what it bloody is. I know what dehydrated disc is. It is what I was bloody told it was all along but then ignored/forgotten told it was not. It is Degenerative Disc Disease. And having reviewed my understanding of it as I forgot all about it, the symptoms are exact. Right down to damaged endplates. I have that info from previous MRI but was told it was not significant on it's own.

And. I now know the technical term for this misalignment that I have as the surgeon told him. It is retrolithesis which is backwards slippage of the vertabrae. It is caused by injury (glass on my spine incident). It tends to accelerate disc degeneration. And it causes similar symptoms/running alongside DDD, including sciatic pain. Both DDD and retrolithesis can be managed with Injections. Or Spinal Fusion. I have been told I can't have injections. I am fully expecting the surgeon to say he can't do anything. Not that I want fusion. Just some kind of answer. The consultant said at the time of appt to discuss surgery that he would consider fusion due to the vertebrae slippage, but decided it was not pronounced enough.

I know this is not something that is going to go away. I think I always have. It has always felt long term. Not sure if that even makes sense. I

I have diagnosed myself with all the info I have from medical professsionals. I think it's pretty accurate actually. DH has said I shouldn't be self diagnosing but even he agrees not much else for me to do in the absence of any medical professional being involved. I think I am in the wrong job

The most telling symptom is that there is a baseline level of chronic pain and that with that there are flare-ups of significant levels of pain which subside within days, weeks or months, and returns to roughly the baseline until the next flare up. That is what has been happening to me since before surgery. I wish they had taken the fucking disc out.

And thank you denial, you are right. As DH said, I need to hear what the consultant has to say yet, I am projecting. And if I get nowhere with this, I will look elsewhere for support. My GP is supportive but a bit out of his depth really. I really don't get why they just don't give me the fucking injection. How can nortriptyline that slows me right down be better than an injection which could have me walking without pain, even for just a month or two. I said to the GP that I don't feel so bad on the Nortryptline, but the world is a bit faster now. He said 'thats the medication slowing you down'. Great. I actually think he was a little annoyed that the nurse has overridden his own medication plan for me. And I think he is right (he had suggested pregabalin for me, tried before, didn't want to take it last time, he was fine with that at the time).

There are so many bloody people involved, and none of them talk to each other. It's slow, no-one speaks, I seem to know more than they do!

denial oh I just re-read my post about the dehydrated disc and it reads like I am having a go at you for some reason! I wasn't it was a realisation that I had, but I was speaking to you! Like, I know what it is! That's what I get from not using expressions when I am annoyed. It sounds like I am being rude.

Pavlov I think you have come up with a possible self diagnosis there. I think denial is right (I did wonder why you were having a go at her at first!) maybe you can get better help. If you are happier with your Drs medication plan you can at least go back to him and tell him you are not happy with the nurses advice and can you switch to the pregablin as he suggested.

"I know what it bloody is! I know what this dehydrated disc is. It is what I was bloody told it was all along but then ignored/forgotten told it was not. It is Degenerative Disc Disease. And having reviewed my understanding of it as I forgot all about it, the symptoms are exact. Right down to damaged endplates. I have that info from previous MRI but was told it was not significant on it's own." Denial, for letting me know I have other options, I think you are right, especially now I know what it probably is' it should have read more like that. sorry my lovely. I was too busy thinking what I was thinking and having yet another rant, to read how it sounded.

live I am going to do what denial said. I am going to just sit back and do nothing for now, pause and think. it's gone on so blinking long, that another week isn't going to slow it all down any more than it is already and hasty action now won't stop my pain anytime soon.

DH and I have argued. Over something really petty, we were gonna watch some episodes of a tv series, together but his mood was foul, so I have gone to bed, he has gone out. It's bloody cold up here, and I haven't even sorted out my meds or a heat pad. I am too sore to get back up and too fed up

live when I got my first MRI result back, about 18 months ago, it was suggested by the osteo and my GP that it was DDD due to damage to endplates, bulging disc, annular tear, and excessive dehydration of the disk. I was told it was simply down to wear and tear and I was unfortunate to have got it at my age and have pain but it's just one of those things. I then went on to experience more pain and significant nerve compression symptoms and that view was sort of thrown out of the window when the bulge became worse/prolapsed, and that was what was focussed on, that and the nerve pain. And as it was only in one disc it was like, no, just a simple disc prolapse and the rest was forgotten. Although funnily the extended scope physio in the spinal pathway team said to me that soon enough the disc will dehydrate enough that I will no longer have any pain as the disc will have disappeared completely. He said this will take around 10-15 years I told him I couldn't wait that long. I then asked what would happen to the vertebrae when there was no disc left. he said it would fuse 'naturally' but, I now know from others who have no discs that, two vertebrae rubbing 1) won't necessarily fuse on their own and 2) it will cause excrutiating pain in the meantime! Twit.

I wonder how our hospitalised friends are getting on?

Don't worry, I didn't hear any shouting :). I truly believe we have to be our own experts in our own symptoms. None of the physicians currently working on my issues have read my whole bulging file, they can't put together x that happened 15 years ago with y that's happening today because they deal with 50 "delightful young ladies presenting with chronic back pain" a week etc. I think a fairly prominent person in NICE came out this week and said patients should be more "polite but firm and informed" this week and frankly I couldn't agree more.

The person with the greatest stake in keeping me mobile and functional is me. I'm the one that has to live with the outcome.

Strangely I only found out by accident before xmas that the upper back pain that predates the arthritis / lumbar problems was shown to be ddd on the MRI I had two years ago. Nobody thought to mention it. How did I find out? Reading over the rheumatology nurses shoulder at a detailed MRI report, only one sentence of the A4 page had been relayed to me. I really need to request all my hospital notes and read them but the process is so annoying that i never seem to have time to start it. I had a good read of my GP notes before they were sent to work Occ health last time I was off sick.

Perhaps your DH is also hurting (emotionally) and in shock. He probably was also hoping deep down for a miracle solution. I'm sure my DP would like one too. Try and give him some time to adjust.

yes i realised what you meant when i reread it, i think a break to think is a good idea.

Medical people are very variable. My mum is a mental nurse and very keen on her subject. She has a real interest in it, besides having suffered problems herself. But she tells me some do not have the same attitude. Also there have been a lot of cuts and the services are reduced or not as good as they should be.

Now go get some meds, heat pad and choc, you will feel better. I expect you are feeling a bit stressed out from it all. Maybe a bit more online shopping would help?

denial that's so crap! So there has been potential diagnosis for some of the issues before you even knew! I have been reading that DDD can speed up, or be the cause of for example osteoarthritis, spinal stenosis, spondylithesis (what I have but forward not backward), so perhaps you knowing about DDD would have been quite useful as your health deteriorated? FFS. 15 bloody years and that could have been the start of all those other problems. It might not have changed the direction of your pain and conditions but knowing would have potentially meant less angst along the way, finding the right ways of of managing pain!

DH is more annoyed that I interrupted him reading something on the ipad. Twice. Because I didn't think he heard the first time. Like I said, petty. But I will give him the benefit of the doubt I am sure there is an element of him being upset that this is probably not going away. First thing he said was 'I remember that was mentioned already , we have been through all this, they can't fix it then can they?' He also expressed concern that arthritis is likely in the future, which it seems, if it's DDD, then possibly so. So, yes, maybe another dawn of realisation for him.

I am still not out of bed to get my stuff. I just want to curl up in bed and not ever get out of it again. Not until they have found a cure for all back pain.

Oh my bank balance if I do more shopping would stress me out even more I so need chocolate. I didn't buy any today. What was I thinking

I didn't go to the gym. We had pizza instead. Tomorrow, I will do it. Yep.

live how are your pain levels now? improved any?

I had my medical file when I had my x-ray before surgery. I read some of it, including my gp writing a letter along the lines of 'do something about this now please, she has clearly had enough' in a letter to the neurosurgeon I read some info about the birth of DD, and then I got called for the x-ray. I was quite gutted Thing is, I didn't realise it had all my notes in (not sure what i thought it had in it) until I was in the little cubicle bored. I had the notes for a good 45 mins before the x-ray, I had a coffee, should have read them then! But. I also had the wrong file for a while. I was given it by nurse to go get x-ray, met with DH, we got a coffee and had a drive for 10 mins before I went back in, and the whole time I had the wrong person's notes. I walked into the coffee shop area to find the nurse running over to me 'i've been looking for you!!' taking the notes, giving me mine, and running off, red faced!

I think they took my lead, first conversation with rheumie three years or so ago "I've had upper back pain as long as I can remember, I can live with / manage that, this is new and I can't live with /manage it". I think I got first damage falling backwards off roller skates aged 5/6. I remember my back hurting and not wanting to tell anyone in case they took my skates away. I had pain on and off from then, worse in teens. Various fairly quack like diagnoses (sheurmanns disease), lots of drugs, frankly useless physio by 100s of sessions. Its quite amusing that anklosing spondylytis is back on the diagnosis menu now after first being mentioned by a physio in 1998 (and supposedly ruled out in 2000 by my first MRI how I would love to compare that one with last months)!!

My worst points were when it was suggested to be "in my mind" and that's where being shown the damage on the MRI could have significantly helped my confidence and self worth. I bet the same / earlier damage was on that 2000 MRI when I was a student and fibromyalgia was suggested and amitriptyline offered. I binned that script, moved countries and didn't mention my back to a doctor for ten years.

I think that nurse could have been sacked / reprimanded for that notes faux pas no wonder she was flustered!

Thinking back the worst medical disaster was when the uni docs put me on codeine based painkillers aged 17. I had been happily managing on ponstan (prescribed by family GP) before then, luckily I didn't get hopelessly addicted but seriously handing a 17 year old a prescription for addictive painkillers on endless repeat. Its shocking. Its a wonder I got a degree at all....................

Yes thinking of all having ops. Sending lots of love xx

My pain is much lower again. I wish I knew what set it off, and what made it better. I did take the naproxen again and that may have helped. It is still sitting and lying down that hurt more than standing. But i am not really fit enough to stand up all day and i get tired quite quickly so difficult.

demial bloody hell! How on earth have they not been able to get it right for so long? confiscates DDs new roller skates i can imagine it knocking your confidence badly when continually fobbed off, and that is where I am now, and the whole 'it's in your head'stuff is just the worst. I haven't been rod that in so many words, but I was very quickly told by pesto at the beginning that pain can be brought on by stress and suggested CBt even at the early stages and it was proposed in a way which suggested I was doing something to cause the pain, psychologically. I now know I think, that what they are trying to get at is that negative mood can negatively impact on recovery but it never comes across that way. I have also been reluctant to talk to my GP about a few other things going on with me, because I don't want to be given the fibromyalgia diagnosis which I know a couple of people who were incorrectly diagnosed with that, as a sort of 'well I don't know what's wrong with you' kind of label.

I am amazed and impressed, not for the first time though, at your ability to be confident, positive and so in control, especially given what you have experienced for what has been in effect most of your life.

I mentioned to my friend who is a community nurse about the file, casually in conversation and she was and said that it is potentially a stackable offence, that she would definitely have had disciplinary action taken. I didn't read the notes, I didn't even know they weren't mine. The folder was very small though, compared to my huge file, so wouldn't have been interesting I am glad I didn't say anything about it. I would have hated for her to lose her job over what as obviously an error, which luckily for her had no negative consequences and she clearly knew it was serious. Bet she didn't do that again in a hurry. What was a GP doing giving you Codiene at 17! Insane!

Thinking of goodness and scone today. Hope you are both comfortable and being looked after.

goodness has posted on her thread that she has had the op and in recovery, she sounds like she is enjoying the morphine is feeling ok right now.

scone hope you are doing ok too.

I am feeling o.k again, just achy when sitting or lying in a postion that presses on my back, obviously not ideal as I need to sit down, but not too bad. I decided to take the naproxen for the next few days. I did try to ask dr about whether I still needed it for anti inflammatory purpose rather than just a pain killer last time but he was a bit vague. If it is just a pain killer I could stop it as not in that much pain now and it is only intermittent so I can just take something if needed, but if it is still needed as an anti inflammatory I might need to keep taking it regularly as the effect builds up.

Another problem I am having is that I am still trying to rest as much as I can when not at work, but the housework is starting to get a bit out of control. I think I need to get a bit more organised and change my routine so I am getting things done regularly so the tasks are quicker and lighter, rather than feeling I need to rest as much as I was. It will probably be better for me to keep moving more but gently, then I can get my jobs done and get an early night for extra rest. Ok I think I just solved my own problem there. I have always been one to leave things to build up especially if I am tired, but I think I need to change that.

live will go and post on her thread! thanks for heads up. Re naproxen, yes it's anti inflammatory which is why it's good for headaches and sore throats etc. definitely take it, and alongside paracetamol, it will work brilliantly to help with the niggling pain that is there. It's not harmful at all it taken with food and for not too long without acid reducing meds, but if you need to take it for longer than say 2-3 weeks, ask GP for omeprazol, which tbh you should be given for longer term use anyway. But certainly for use for a few days week or two at a time it is fine, and for me it's probably one of my best meds in terms of pain relief, actual long term pain relief, rather than hiding pain which opiates do. It helps with pain but also with the symptoms of pain relating to inflammation, iykwim. It's why I don't get why they want me to stop it if working, yeah there are long term problems if I base it for years with no monitoring, but. So is long term pain, a from my on research, long term imflammation is linked with auto immune conditions, so it's swings and roundabouts even long term. But, for now it won't cause you problems as long as you eat first.

Glad you are feeling a little better. I know what you mean about housework. I have a grabber thingy now which is marvelous. Kids love it too though so it's often now where I can find it I do things much more slowly now, and have accepted a certain level of deterioration in standards. The house is always clean, but not always tidy. I try hard to make sure the floors are clear as standing on things can jar my back and have me in tears. I have never been organised, and would leave things til I they really needed doing, then go on a mad blitz and have a wonderful tidy place, but I can't do that now, I can't do blitzes. I have always been last minute girl for most things but have to plan and consider much more. I guess it's not a bad thing, just not my natural way.

I have read that upright vacuum cleaners are better for people with back problems than pull along ones (which we have, a Hetty), and also it might be worth you looking at things like how your kitchen cupboards are arranged to minimise bending and lifting etc. our kitchen is pretty much a no go for me as it's so badly arranged but needs to be remodeled to actually bro ex ok for me to use. Can't afford a new kitchen just yet!

Great I know it was soon after taking the Naproxen that I started to really improve before. I did read it was better for your heart long term than ibuprofen.

I am going to think about all the housework tasks and see if I can work out the most back friendly ways to do them. I haven't hoovered at all since i got bad and dh has only hoovered about twice! So that is on my list. My friend with a bad back also said she found an upright hoover better so i will look into that. We are on a tight budget right now though so have to be careful what i buy, i think she just had a fairly cheap one though,I will ask her. But i love Hetty hoover, you cant replace her.
Did you make it to the gym today. Be careful if you do, did your new gym clothes come yet if so at least you will look great.