The Back Story Continues

[Matildathecat]

This is the support thread for all sufferers of back pain. Everyone most welcome to join.

Here's our first thread

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

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.

Please post and include your story if you'd like to. No niggles too small, this is strictly non competitive!

Welcome back Matilda! Although in internet world you have never been away. I guess you are already saving to go back.

Well got through my work day. It is short thank goodness and did not get moaned at. Now a week off work hooray.

How are you all getting on? losty hope listening to Frank made the injection go easier.

pavlov hope you are ok. Did you have to work?

matilda yeAh back safe, but boo to the weather right? Hope you are not too jet lagged. live how was the play? Glad work was ok. And Yey! For holidays. goodness good luck with the reducing! but nice and slowly! there is no race. losty hope the injection went ok! thank god for your new headphones and frank turner eh?

I made it into work. 8:30am appt due in, didn't turn up. I didn't have meds, or brekky, and was in soooo much pain! Took meds once in work and had porridge, forgot I had supervision with boss, was somewhat spaced and a bit wired oops! but it kept me through the day. I got up after 30mins sitting with pins and needles/numbness on my butt cheeks! Luckily that passed after 15 mins or so. But, sitting increases leg numbness, which reduced when I stand and bend forward a little, but increases, as does pain, when I walk, feels like leg is going to snap. And, still have odd viral type feeling in spine with pain. I was probably a bit too honest with my boss about how I was managing, and DH said I should not tell them too much ant things like me winging it and feeling it's a bit much to manage. He is probably right, just giving them info to suggest I can't do my job. That's what happens when you have supervision 2.5 hours after taking Codiene!

Now laying down, DH is buying nice incense and we having a nice meal.

My iPad has got the same illness that matildas has. It keeps adding exclamation marks. Grr.

The play was great! Dd was poor girl 2 and had a line to say.

Pavlov do you think you should go back to the Dr and moan about your pain coming back? Maybe he would push for further treatment or look into Lost's suggestion about arthritis

live how old is dd? Was it a Tudor poor girl? I ask as dd is doing Tudor stuff and they have done a Tudor dance this term.

I don't even know what to say to the go any more. I only went to see him a couple of weeks ago in person (normally talk over phone about my back these days) and told him I feel so tired, fed up bit generally unwell, didn't know if relAted to my back and just feeling rundown with it, or if other stuff as going on. However he paid attention to my thinning hair, poor skin tiredness etc, and so checked thyroid and a general Mot, checking kidney function (I only have one), liver etc, and it all came back 'normal'. I don't know if they test for inflammatory thingies etc in the normal blood test. I just don't want to keep going on about things being wrong all the time. I feel like such a moaner, trying to find something else wrong with me, and I really don't, I just want to feel ok, know what is bloody going on.

Sort of feel that everything has stopped, medical wise and not sure where to to next. Still not heard about my MRI and well given up on that. I need to have it through pals but just no time to call or write the letter needed.

It will sort itself out, it will ease soon enough. nothing that a bit of tlc from dd won't sort out she is currently putting make up on me, then nail varnish. So I look pretty for daddy.

Aw TLC from dd is just the thing. Yes you are right they were doing Tudors. My dd is in yr 5, she's 9. I'm sorry to say she is not as advanced as some of her friends, who can speak a whole ream of lines or her best friend who has pushy "tiger mother" style parents and played a solo of green sleeves on the violin. But I secretly thought she was the best and the prettiest .

I know what you mean about not wanting to moan too much at the GP but its bad they (meaning medical people) won't do more to help.

Morning! God sedation is a bloody lovely thing . I am the new owner of bilateral steroid injections to my SI joints and only on here will people understand the utter joy of someone sticking big fuck off needles into the back of your pelvis and causing you extra pain! I also have what looks like an extra large old school sanitary towel stuck to the back of my pelvis, which is nice . Anyway, consultant was lovely, even further away than the ones I saw the other week but he is going to call me back in 2 months and see how I am and if this hasn't worked inject contrast into my spine and see where the odd bits are and go from there. That is just so bloody marvellous, after a decade of being limited by back pain I can see a more optimistic future. Although they did say some of the sedative drugs take 24 hours to wear off fully so not to sign legal documents so maybe being happy is a side effect :-D

How is everyone this miserable weekend?

Love
Hope you weren't moaned at. I've cut oxy slow release from 15 to 10 but don't think I'll tell doc next week as may need to increase. Maybe. Will see. Whole week away. Off to see consultant this morning. But don't know care plan as other consultant didn't call to tell me, as promised.

lost yey! for big fucking needles! I really hope this gives you some of the relief that you desperately need.

goodness i think it's sensible to not advertise your titrating down in case you need to increase again, there really is no rush, if you need pain relief, definitely don't be stubborn. Hope you are feeling ok pain wise and your DH is being supportive, well more supportive?

I am not sure how I am feeling this morning - I am still in bed! I feel sore, but moving ok, and slept reasonably well, and haven't even got out of bed to go to the loo yet! My lie-ins don't consist of actually sleeping as DS gets into bed with us at stupid o'clock then when he is ready to get up he paws at my face for hours. DH finally got up, and then DD likes to come and tell tales on DS/DH if things don't go her way. Although, she has just been up for the millionth time with 'a cup of coffee tea' which is herbal tea made with the hot tap, not very hot as she knows she is not allowed to use the kettle yuuuuum. Luckily, DH also brought up a real coffee. He has said we are meeting friends for breakfast. I do want to go as I have not seen these friends for weeks and weeks, but, I also wan't to do nothing today. Recover from my week. I am going out tonight (2 nights with DH and no children this week, unheard of!) to a friend's for a dinner party as it's his birthday so want to be ok for that.

I now need a wee once I am up, that's it, no returning to bed. So holding on...

Hi losty great to hear you got on well with the injections and that the consultant sounds helpful and will do more if these injections are not working.

Mumsnet was down last night so hope you were all doing nice valentines things or too drugged to notice . My dh was working night shift so I watched Despicable Me with dd. I enjoyed it, did you know the elderly Dr Nefario is voiced by Russell Brand? He also did the voice of the rabbit in Hop which was a good film, if your dcs are the right age and haven't seen it yet. Well you can see I have an exciting life! While suffering MN withdrawal I found this back website which seems interesting spinal health it also has forums, the mods seem a bit Ott iykwim but may be some useful info on there from posters. One thing I saw that might interest Pavlov is that DDD can lead to increased risk of arthritis so the two conditions maybe related.

I love Hop! well, I did, until probably the 50th time. I have been on the spinal health website a few times, read some interesting things, but found it hard to navigate. There info is good, but their forums are really difficult to get my head around, none of the threads ever really go anywhere. I posted a couple of times, but, I guess there are so many people positng with back problems, no-one every really replied. I do get emails from them from time to time with interesting articles but it just makes me go 'i wonder if that is my problem?' every time

Thing with arthritis, wouldn't that show up on the MRI? bone spurs etc? I don't know about the last MRI, but the first one didn't show anything like that, it showed damaged end plates, and the problem with the disc, but no foramen issues (stenosis), can it occur in 18 months? But, then, I also know RA and OA are different, but don't know if RA would show in the joints yet? I don't even know if I want to ask the questions. Can I just pretend it's going to get better?

It's funny, I now remember my mum having arthritis in her back, I mean, I always knew it, but never really linked it, til DH asked if arthritis is hereditary, don't think it is? She had it in her neck in her 50's onwards, always said she thought it was due to sitting by a window that was always open at work! She also had it in her hands, but I don't know if it was diagnosed as RA or OA, I suspect OA as she was not medicated on all sorts for it. I so wish she was about, as she may have information that I could do with knowing about.

Goodness, great plan to cut down if you can but keep he prescription at the normal dose, you can always keep some for emergencies then when you would struggle to get a prescription quickly (probably goes against proper medical advice but when does proper sensible medical advice ever have sudden world encompassing back pain?)

Pavlov I had thoracic back pain for 5 years before my first x-ray (and that was because I was in a car crash!) it didn't show up until I had an x-ray at about 27 but then it was pronounced. With an inflammatory arthritis the actual inflammation in the joint causes pain first before bony damage actually occurs, I think this is why they go in hard and fast with the treatments nowadays, even if there are no good blood results, because if you can stop it before the bony damage (which is irreversable) occurs then it's a brilliant outcome for he patient (and saves money in the long term because they don't have to replace lots of joints!). I don't know if it is hereditary, my mother keeps asking me if I got it from my parents which is really helpful when you are adopted . I did point out to her that it was probably too late now to take me back and ask for another one because the one she has is defective . Enjoy your cup of coffee tea.

I'm quite glad MN was down last night because I think I was mildly euphoric after one of the sedative drugs and I wouldn't like to be reading back the crap I had posted on them right now!

Losty I sometimes think i should ban myself from MN after about 9pm as my judgement of what to post seems to go when i am tired, but as i say dh often does night shifts and i get a bit bored here in the evenings, so i will not enforce my ban after all.

pavlov i just googled to see if arthritis is hereditary and there seems to be some types that possibly are or may be just the things that pre dispose you to it are.

Not that I am sure you have some form of arthritis as I don't know much about it. It is so frustrating that the Drs don't investigate more. Where is Dr House when you need him? He would have you in that MRI scanner in no time.

Oooh, I dunno, wouldn't you end up misdiagnosed and given life threatening drugs a couple of times first? Mind you they always (well nearly always) leave perfectly healthy and looking beautiful and he is gorgeous so, might be worth it .

When I had the standing X-ray last week ( feels like months ago), there was clear arthritis around the affected vertebrae. The chiro said that basically once the discs have dehydrated and lost height, the surrounding bone inevitably becomes arthritic as the cushioning of the disc has been lost. You could see the difference between a healthy area and the damaged bits really clearly.

lost, I only had my left SIJ done and now my right side feels much worse. Think I'll ask for both next time. Overall I def think it's helped my leg and buttock pain. Having said that I haven't really reduced my analgesia other than when on hols as I didn't have to do much.

goodness good luck with your reduction programme. Steady. Are you actually feeling any better yet? Hope your consultant appt went well. I have a bottle of oromorph in my drawer. It's my insurance policy. I hope I never need it but having a standby is a comfort. I've actually got a frightening stash of drugs but I'm quite organised and careful with my consumption. I'm finding tramadol slow release quite good (150mg) but do need to top it up. GP recommended one a day but maybe 2would be better.. Anyone done that? One first thing and another mid afternoon?

My parents are fitter than me! Having said that quite a few of us in the family have had back and neck problems.

Lying down with my hottie after wet walk with friends in the park. Oh yes, I'm home!

With the top ups I normally have one late afternoon to see me through to the evening dose and that's all but when I'm very sore I have one morning, one afternoon and one at bedtime! I think as long as you make sure you never EVER have more than 200mg in you at one time it's ok. I don't think GP's would go recommending this willy-nilly though because of the danger of people not being organised enough and accidentally overdosing. My GP made me promise to keep the 50mg slow release in a completely different place to the 50mg normal ones. I have the 100mg slow release for normal days but they are a different shape so not so easy to mess up! I can tell when I am having a brilliant day because I can get to 9pm without remembering my next dose, normally I am staring at the clock willing it on to 7.

I was SO pleased hat I had both SIJ done. I know that I can feel a difference in my upper back from the injections two weeks ago but that is spoilt somewhat by the pain on the other side My parents are WAY fitter than me but my mum can't help herself by pointing out she is older and I should wait and see how awful it is to be nearly 70. Most of the time I restrain myself from answering . Enjoy lying down with your hottie, I know it isn't quite Raffles but there is a certain joy to a hot water bottle on a damp cold day.

So shall I omit to mention to doc that I've actually cut down? I'd kind of thought of that but it's oh possible if hospital pain team are happy to have me call for advice.

Consultant appointment t was good in that he let me give him a 'thank you hug'. His actual words when I said 'I want to give you a hug to say thank you but you probably wouldn't want that!' were 'I'd not object.'

Had a teary moment. Also told him my hubby had seen him on our local village having had his hair cut. Must think I'm a loon / groupie. Lol

But very disappointing in that the other surgeon (rare tumour man) hadn't actually sent him any info on the histology or on the care plan (meeting tumour man held about that was only on Thursday). Frustrating - much. But you know what, I know how bloody lucky I am. I hope, at any rate. Dodged a fucking bullet. ('scuse my language).

First of all, to have found the tumour incidentally, to have had it removed (with a bit of bone drilled off, too), to be recovering at such a remarkably rapid pace, no 'bags' (was a real risk), no drop foot. It's as if nothing happened. Just not able to be upright for long. V sleepy, bumping into everything (drugs?) and ... v emotional at times.

Should I drop the amatriptaline or whatever next? Don't like the idea of being on anti depressants. Although was told they are for nerve pain. If they are anti-Ds, they don't bloody work! Lol
I've been really crying on the odd occasions. Like... sobbing. Feeling terribly sad (not pitiful but deeply upset) that other people aren't as lucky as me and are faced with a limited recovery or further nightmarish emotional and physical nightmares - either with back problems or cancer.
Just shit.
Gonna do a money raising thing when I feel up to it but doesn't feel enough.

People say, just focus on yourself, your own recovery, be grateful, blah blah blah. Just can't. I'm grateful but ... as I've said.

goodness I think you are already being positive thinking you are lucky. I think something like that does focus your mind on doing something worthwhile with your life, which is good. But you do need to get better first. I'm sure your experience has already helped others in that the surgeon and medical staff have learned from it. How about starting to write your story and when you are ready you could share it in some way, maybe online, and this would educate people about your condition and help anyone with a similar problem to know how you coped and how it all happened. Also sometimes helpful to write about things if you are down and get it out of your head.

Hi Goodness, I've been following your story, you are amazing. Amitriptyline is not used as an anti-depressant, it is used for nerve pain. I was put on it after I slipped the disc in my back which pushed on my sciatic nerve. What dosage are you on?

I was hoping I could join you guys. I've had a constant back pain since September. I slipped the lower disc and had sciatica, then dislocated 2 ribs. They have all healed however I have been in agony where my kidneys are since August they don't know what's causing the pain. I have to have blood tests on wed as they think I may have a parathyroid tumour.

I have fibromyalgia and CFS and I suffer chronic back pain from that too. I'm taking tramadol, co-codamol, topomax & diazepam at the moment but nothing is touching the kidney pain

Helibee, welcome aboard (being a bit ahead of myself as I'm a newbie here, too). Here, I'm moving up on the bench. Squeeze in!
I am on 25mg amitrip
Forgot to take my 8pms so just downed my 8s with my 10pms. Hey ho

Am wiped out today!

An also intrigued. Without wanting to seem like I'm digging for compliments, I'm intrigued... how am I amazing? I'm bloody lucky and the surgeons are beyond words in their skill. But I'm a scaredy cat who has had no choice but to show up for the theatrics. Don't mean this in a brush-off or defensive way (coming across all wrong) but I've been whinging n whining, running into MN rooms (including this one - sorry) blurting stuff out with my eyes closed tightly, running out again, leaving nothing of use to anyone else. Amazing? Selfish n scared, I think.

And here's another dump-n-run: by gd does my bum hurt tonight! More of an a he than a hurt. But feels like muscles being torn back again. Yukky. I know that they cut them away to get tumour out. This feeling just makes me envisage it happening again. Surgeon says Physio can't harm even though I told him about it. But I keep overdoing it by trying to do all 10 of each exercise. Numb n tender. Ewwwww

I'm bloody lucky and the surgeons are beyond words in their skill.

No argument there, they've clearly done an outstanding job.

But I'm a scaredy cat who has had no choice but to show up for the theatrics.

Wrong! As long as you are mentally competent, you have the option to refuse treatment.

Don't mean this in a brush-off or defensive way (coming across all wrong) but I've been whinging n whining, running into MN rooms (including this one - sorry) blurting stuff out with my eyes closed tightly, running out again,

Better to blurt your emotions/fears/pain out and have a safety valve for the pressure, then bottling it all up - talking/writing/moaning are all ways of coming to terms with what's happening (whilst you're whinging, your brain is processing).

leaving nothing of use to anyone else.

I've been following your story enough to know that your threads have almost become a support thread, not to mention that the next time someone arrives on MN with a similar journey ahead of them someone will point them in the direction of your threads. Sometimes just knowing that someone else has faced something similar and made it through can be invaluable.

Amazing? Selfish n scared, I think.

Scared is reasonable (you were facing a big op and potentially nasty results), selfish is reasonable (a bit of selfishness in a situation like this is what gives you the impetus to push for what you need in order to get though) - neither of these factor make you less than amazing, they make you human!

Goodness you are amazing because you have got through a shitty run of luck which must have been scary as fuck and yet you can still see the good bits and are mega proactive in sorting yourself out. This means you CAN get through this, so pleased you have no bag or footdrop, even more pleased that you can list these positives instead of go poor me. I will join you on the sore buttock bench (or shall we just have a row of massive beanbags so we can get comfy and alter our positions every so often?).

. Welcome but sorry you are here.

Had to laugh today, was still sleepy from the sedation (or the adrenaline wore me out from worrying about yesterday, one or the other) so I had a sloppy day today in tracky bottoms and had a nap on the sofa all cwtched up with my dog. I have to take my hearing aids out to lie down or they whistle. I woke up and put them back in to realise the room was noisier than before, sat up (slowly!) hair all over the place to see the room was now full of DS1's friends all half men half teen watching the Olympics . They didn't seem bothered by the ogre rising up in their midst though so I guess we are ok .

SEE you are so cool