More Terrible Back Stories

[Matildathecat]

This is the support thread for all sufferers of back pain. Acute, chronic, agony or niggles, we are strictly non competitive. All newcomers very welcome. (Though be warned, the language can be a little 'ripe' ).

Here are our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

So come and join us for moans, advice, downright rants or just a laugh.

Matilda, yes
Feel sick and eyes hurt with fatigue. It's time to get up
Haven't gone to see DS' first football match. I feel like an awful mother. So guilty. ESP w him being possibly AS

Morning all. I am In Bed. Not going to work might before I read your post, had already decided I can't do work today, so great minds and all that I am hoping just a day doing absolutely nothing in bed will sort me out; bed and strong painkillers. I can't quite figure out if my pain is worse than normal, or my tolerance to it is reduced. I think possibly the latter, maybe a little of both. I just don't want to go about by business today with pain always always there today. Some days I can get on with life a little better than others. My resolution to take my life back still stands, but perhaps not today

I am going to be productive though, and talk to (try to talk to) the pain clinic about injections today.

Has anyone had hydrotherapy? I have my first appt tomorrow, it appears only a pre-assessment but, once I get the actual session, what can I expect? Is it basically a big hot bath? lovely warm swimming pool? Does a physio come into the pool? stand at the side? Is it actually beneficial, seeing as it's not likely to be several times a week?

matilda good luck today.

Oh and yes, to massage thumb! I was told no chiro by physio from spine team who said the disc could burst if I am manipulated the wrong way, but, that was when it was prolapsed. Apparently, it's not prolapsed any more I think that means I can now I am going anyway, when I get around to booking it. I have a recommended chiro, several people not known to each other recommended the same one so must be good, I think. My personal experience of osteo was quite lame in terms of treatment, but I think that was the person themselves, although he did identify immediately by observing my movement that I had a prolapsed disc, and he (his boss) ordered the first MRI so not all bad.

Matilda - I can only speak from my own experience re. physio, and that was NHS physio, which did a sort of job for the crises I had, but in the end failed to address the basic issues of my back problems.
I had 2 referrals for physio, one for the neck problems that gave me vertigo (and a stiff neck, and migraines) - it didn't really help, although I did find out that 1) manual stretching of my neck was nice and 2) traction of my neck really fucked it up. Also, point pressure on (I think) C4 gave me an instant migraine.
The second one was for a thoracic muscular problem, which caused my entire back to seize to the point where I couldn't breathe properly - because I worked in a hospital, and was on call, I phoned through to A&E to ask to come down and see them, and got an emergency referral for physio the next day (you don't get many perks, working in the NHS, but that was one!) - that worked a lot better and the physio helped me to learn how to diffuse the tension in that muscle.

But at no point did either of them spot the bends in my back, nor the tilt and rotation in my hip, nor the shunt in my neck - all of which the osteopath did spot, and straightened. I grew 1/2" in 8 weeks!

But - that was NHS physios in an overstretched physio dept in a busy NHS hospital. I can't say anything about private physios, because I've no experience of them, and they could be far better.

Re. the difference between osteos and chiros - well, after extensive discussion with various people, I've come to the conclusion that, apart from Mc Timoney chiros who are different, the only real difference is "value for money". In that, you visit an osteopath, pay for half an hour or whatever, and they'll treat you for that long. You visit a chiro, pay for a treatment, and it could be 5 minutes or an hour, depending - but will still cost you the same.

But - you are absolutely 100% correct in saying that it isn't really about the modality, it's about the right person for you - and that's what can make it really difficult to find the right practitioner. Sounds like you have a good one though! :)

Oo, big xpost! because I was banging on, despite saying I wasn't going to!

pavlov sorry you are confined to barracks. The 'is it worse pain or less tolerance' question can only fuck up your head. If it is lower tolerance, which I doubt, you are blaming yourself for some kind of weakness which is just plain old wrong. So get through today then tackle tomorrow. Good luck with the phone calls.

Re hydro, as you know I have a hydro program which is basically just exercises in the water. I do it at the gym pool, though. If you are going to a specialist place (lucky you) yes, it will be a dreamy warm pool and yes almost def the physio will be in the water. Nice warm muscles and much lower risk of injury so should be beneficial. But, will the nice effects last? Probably not much but you can live in hope. I think a lot of hydro patients are quite severely disabled ie strokes so you will probably be quite fit by their standards. The exercises I do are quite strengthening and easy to remember though after two years I am I tad bored with them.

Enjoy! And thanks for the good luck wishes. Off to do my homework now. I think ATOS have been in the news this week so very timely.

Cross posts all round.

I got lots of nhs physio, too due to being an employee until they fired me . Mine now is miles better, very, very rehab and body aware. We actually do Pilates cos she used to teach the classes I attended. One to one is expensive but worth it. She understands I'm not going to suddenly get better but together we are at least keeping me strong.

I think we do all have days when we can tolerate pain more, or less, depending on what else is going on. I am tired. I guess that is making the pain worse. I am fed up, that is making the pain worse. But, yes I think the pain is worse lately. And that is not in my head I am sure.

I can't remember who said, about when they had surgery, they felt the significance of what was found validated their pain, that before that they felt like they were just being a wuss and not able to cope with low level pain. That is spot on to how I felt, I felt, when the surgeon told me that I needed a discectomy to fix the problem and there was a vertebral slip which was possibly adding to the pain, I was relieved. Not because there was something wrong, as I already knew there was, but because I had wondered if it was not as bad as I felt, and I just was not coping well.

I feel that again now. I feel that the HCP around me have minimised where I am at now, and I once again wonder if it's just how I am interpreting the pain, versus the pain itself. I mean, I can walk about now, although it hurts, where before surgery there were days when I simply could not move without crying out in pain, and I am not there now, so does that mean I just need to Get a Grip?

I know that pain is subjective and can be managed to some extent by mindfulness and positivity, but I appear to be very bad at that!

I have to call my boss. I always hate making that call. I tend to email, my old boss was fine with that as my contact, but my current boss likes to speak in person, so I have emailed with info, and will make the call in a second.

I've called my boss. He was fine. I said I would hopefully be in tomorrow, that I need to just get on with things but can't today, it's all too much. I told him I had hydrotherapy tomorrow and would be calling pain clinic today to see if I can get injections sorted.

DD is home poorly. She has belly ache and feels weak, has done all weekend, and so we are sick together. I think she probably just needs to eat some prunes but i am a soft mother and didn't make her go to school today. She is now bored. It's not even 10am! At least it means no diving lesson run this evening, but still got to go get DS from preschool so can't just take huge amounts of meds.

My muscles are tight all the way up my spine, into my shoulders. Rock solid. Sore. Not spasming, perhaps a little around my lumbar area when I twist/stretch without thinking but very stiff and solid and I have a little but of a headache I also have a numb foot, the skin rather than the foot. definitely my nerve there. I bet if I had an MRI right this second it would show more than it did before.

Pfff. GP says 'wont prescribe more painkillers until MRI results known'.
Saw Consultant who recommeneded MRI 2 weeks ago tomorrow. Paperwork still not at MRI dept so they cant put me on the cancellation list yet.

meantime, know its not back related but have real pain in outside of left hip which goes to knee (inside if anything) and down to calf muscle (inside more than outside). anyone know what this could be?
struggling to walk even more than usual and have to collect kids (1m walk) at 3pm. Pfff.

firstchoice i read something that I think would be really useful for this thread and have mentioned it before but can't find the actual links I had before, but I have found some leaflets with the info on, aimed at practioners, but really useful for you to know what routes your GP should be considering, pain wise, regardless of other routes. It might help you now, so you can insist. If you don't get what you want, then ask to see a different doctor.

I will link the documents...

WHO (world health organisation) / NICE guidelines for management of non-specific back pain, which it is, until there is a diagnosis this is the website, and within it, there are documents, I will link those specifically for those who are not so great at navigating websites.

first hip pain, especially down the leg into the calf, is often sciatica, which is back related, the hip pain is referred pain. How do you know it's not back related, have you been told so? I have hip pain, it is the worst part of my sciatic pain.

Hi Pavlov - thanks for your posts. The link is really helpful.
No, don't know it isn't back pain, I was just assuming as my back feels 'the same' as normal but my hip/knee/calf is excrutiating. I am sitting here in tears with it. My hips have hurt since my 1st pg (with severe SPD) 10 years ago.

for those who like flowcharts can't bear them myself.

quick reference for practitioners but says more about treatment routes than the patient leaflets, as I suspect they don't actually want us to know!

full guidelines, detailed version of the leaflet but I like all the detail personally it's the full version of the leaflet.

These are not the pathway routes that I once accessed which was fabulous as it clearly outlined when to offer what drugs, how much by and when to refer onwards to specialist investigations etc.

So, when reading this stuff, remember that this is for non-specific back pain that has not yet been diagnosed. If your GP thinks there is a specific problem he will refer for MRI etc, but that does not mean those route outlined cannot be, or should not be followed while waiting. Also, it talks about surgery as an outcome, I am not posting for that really, I am posting to show the options GPs do have, and are recommended to follow re pain management. Which includes referral to specialist pain management team but can be managed at primary care level.

first the notion that you will have no more meds while waiting for MRI, which can take weeks, plus the wait for the outcome is fucking stupid. Sorry for my poor language. It's like he is saying there is no pain. Regardless of what the MRI shows, you are in pain and pain needs to be addressed. It is his obligation, his JOB to help you manage your pain.

There is a leaflet about sciatica, I have lost it, I will go find it.

treatment of lumbar pain with radiculopathy (aka sciatica)

This is a good article as it gives good guidance for treatment steps.

more info on treatment of sciatica

interesting that it says bed rest is not encouraged, not because it is proven to not help, but that is has not been proven that not resting in bed doesn't help.

Also interesting that the decisions to use pregabalin/gabapentin is about local pct choice of use not effectiveness.

And, interesting that I have read several times today that PPI is not automatically considered for those under 45. that will explain why I had to ask for it and why a few people have not been given it as standard. Daft if it's going to be use for a long period of time.

ah. will look more later at links. thank you.
I'm 46.
Scottish nhs, tho

Have fallen behind again with this thread - but firstchoice, I just can't believe how shit your GP is! How the hell does he think an MRI result is going to tell him the sort of pain relief you need? If you're in persistent pain despite the meds. you're already on, you need stronger / different meds. It's such a shame you don't have the option of changing GPs.

Pavlov, hope you're having a restful day - though maybe not, if you're having to entertain DD too. Those guidelines are interesting - is the one for non-specific back pain intended for back pain in the absence of associated leg pain? It doesn't exactly encourage GPs to refer for MRIs, does it?

I was having a low-pain day until I did my exercises. Now it's crap again! Have tried amitryptilline (sp.?) for a couple of nights & it has helped with the night pain - or at least has helped me sleep. Feel hungover & exhausted the next day, though, so unsure if it's worth it. Will persevere for a couple more days, I think.

firstchoice while the nice guidelines might be a little different for scottish NHS, I can't imagine the treatment routes, especially at early stages, would differ that much - i.e., paracetamol/ibruprofen followed by opiates and pain clinic, along with other stuff, that can't be hugely different.

loon no it doesn't encourage MRIs etc, I thought that, BUT, it is for non-specific, and my interpretation of that is no clear evidence of other stuff going on, so, if there is any leg pain at all that would, I would think give the GP an indication that there might be a cause that is in fact, 'specific', and from what I have read, under those circumstances, MRI route is expected but that information does not extend beyond the 'non-specific route' (nor the pain beyond 12 months route - can't find any info on that). What I think is important from this, is that it is clear that regardless of any MRI result, there are quite simple routes for pain management and the lowest level is often something we have to fight for, let alone anything beyond that. But the leaflets suggest that this should all be reviewed regularly, and the patient should be involved and their views considered about their own treatment, as well as things like job loss, depression, young family etc should be taken into account when looking at how it's managed.

As I said, it such a shame I can't fine the PCT guidelines for my area (which would be similar for most areas I would think) as it was very clear about which point the GP should consider referring for x-rays, MRI, spinal pathway routes, osteopath routes. And largely this would seem to be any pain that continued beyond 12 weeks and included leg pain.

I shall see what more I can find while I am at home, maybe we can have a little 'self-help' section in here on how to navigate the barriers in the NHS system, to learn what is is we need to be asking for, how we can be experts in our own care and ask for the right help for our own needs. I have found that by understanding the minefield of processes just a little bit I have got more results.

It's been quite relaxing even with DD home. DD has been good as gold snuggled next to me, and DH collected DS from pre-school early before he went to work so I didn't have to get up/dressed and so I could take some stronger painkillers. I hurt a lot when I am moving, but am choosing to ignore the advice to not stay in bed. fuck it. I am my own expert

also loon amytripyline can take a good few weeks for the hungover feeling to subside, so do preservere if you are finding that it helps, it does pass or at least ease for lots of people. not me unfortunately, but different people react to the side effects. I did find it the most effect nerve blocking painkiller out of all of them but could not cope with the side effects. Sorry to hear your pain is high now though

I got a pain clinic appointment! woohoo! I asked if I was meant to be having a meds review as I have not been getting on wight nortriptyline and have waited so long for a follow-up appt i have stopped of my own accord. She said 3 month review and so should be getting an appt send out in a few weeks. I talked about the injections and the view that they wanted to wait tip MRI, also that the neurosurgeon has suggested conservative treatment but not what that is, or what for, or who is to do it. She said that the neuro is the best person to speak to about the MRI results, but agreed it could be ages before I get an appt so has made an appt to discuss with the pain clinic extended scope physio who she said is good at reading MRis, with view to discuss the injection. She was very helpful actually and friendly too. 15 April so only just under 3 weeks away, quick in hospital appt terms!

matilda looking forward to hearing how you got on with MP. maizie wow you work hard at your studies! well done. I use some psychology in my work we use techniques based on cognitive behavioural theory and I used to run anger management and drug relapse prevention groups, as well as generic thinking skills based groups, all cognitive behavioural therapy based, quite miss those actually.

Have missed the Rush Back Hour. Lol
I'm still awake. Up since 3 today. Had felt hopeful as slept well two nights previously.
Poo
Went to cancer charity and had counseling and massage. Both hugely helpful

firstchoice, your GP should be shot! What utter bastards, refusing you pain relief and thinking that you're putting it on.

You really really need that MRI to see if you do have any crumbling vertebrae/discs; and if it turns out you don't, please please please find an osteopath familiar with the treatment of SPD. You had it for so long, that chances are your pelvis is still not actually aligned properly (my DS2 is now 17.5mo and my symphisis pubis is still occasionally slipping out) and this is likely to be contributing to the nerve compression.

Your hip/knee/calf pain is pretty likely to be sciatica; when I've had it badly it goes right down into the sole of my foot, burning all the way. But there are other nerves that can be affected too - I had a small issue with the femoral nerve in my R leg for a while, which left me with the weirdest feeling, that I had a cold wet patch on the outside of my thigh, about halfway down. It was bizarre! Osteopath explained and fixed it.

I've heard the bed rest thing as well Pavlov - when my friend got her first attack, she had no choice, she was unable to move - had to be lifted off the horse she was on and laid on a bed! Not sure how she managed toilet-wise, can't think it was easy! But in general it's supposed to be better to retain some level of mobility, to avoid the muscles "setting" around the new/incorrect structural position. Only up to a point though! Too much activity and you make it all much worse and inflame everything :(. I get into trouble from continuous walking for >1.5h now. I remember going to Kew gardens with DH, and by the end of it I could barely move my R leg, the foot was dragging badly, I had to get him to go and fetch the car for me because I absolutely couldn't walk another step!

god knows what is going on with appts, it's like I am just sitting in their files until I call and moan. I just called neurosurgeon team, spoke to the wrong person who said yep email was sent to 'expedite' an appt with neurosurgeon but i needed to speak to a different person. Spoke to appts team (who i asked for in the first place) and was told 'yep you are the system now for an appt, I can do that for you now' so why wasn't one just sent out without me asking for it?

anyway. I digress. 9th April! I was asked for appt time any time after 12:30pm, I said I wanted the first appt after his lunch break when he was not waiting for his lunch but not the last appt of the day when he may have plans to go to the pub or something...