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.

goodness I think we are taught to be so fucking stoic about pain, you know grin and bear it, that when we dare say it out loud we think we are just moaning about not much.

I still now often wonder if the pain is mostly in my head. Or at least question my ability to cope with what may actually be low level pain after all. It's not as bad as I think.

So many unanswered questions for you, P
What do you tell the consultants? Probable family history of RA and osteo?

goodness oh blimey, no point telling them shit. Let them just diagnose (or not as is the reality) with what they see. I don't know if RA or osteo is hereditary, but even if it is, might not be what I have and they won't be at all interested in my family history.

yes, goodnessknows I do believe he is.
I have a good friend, 10 years probs with feet, seen 25 podiatrists.
No joy.
Saw my Consultant.
He has referred her for MRI's on both feet and back.
She isn't even in area but he is pulling strings to make it happen.
He is a really good guy.
Says he is so burned out by nhs he is going abroad for a year to treat people in Abu Dhabi, then will come back to 'help those who wont get help otherwise'. He waived a £150 fee for me which enabled me to get help quicker - I cried I was so grateful

First choice, I second the following (but have less experience time wise):
Paracetamol, ibroprofen 400 and the one beginning with O to line the stomach. The first two help to give the others you'll be ranking more oomph.

Crying. Bet, like me, you'll do this naturally. I've ONLY revived a glimmer of the help I've needed when I've been in genuine bits: blue badge (think they'd already said yes but...), pain team support, counsing, my gp to actually be supportive and super nice vs a pill counter.

My other tip is this:
If you take drugs and they don't work - push for different ones. Mine did not work. I was on morphene based ones but they didn't know that my Hip Ache was / nerve pain pretty fucking bad pre op and absolutely excruciating (unless turned every 20-30 minutes in hospital post op. The relief lasting 20 mins). They took a punt on it being nerve pain when I almost cried and told them it wasn't touching the sides of the pain I was in and that I needed to sleeeep. Changed to OxyNorm, oxycodone and gabapentin. Miracle. Pain free!!!!! After years!
Now trying without. You lot think I'm a craaaazy martyr but, in relative terms, I'm pain free and delighted!

Pavlov - how awful. Sounds so ... debilitating. Hope that's not insensitive. Bet it is. Shit.
Did you want to ask your mum questions about her experiences vs know to tell medics?

Just curious you know, the questions I would like to ask to see if there might be anything in it, those things you take for granted with parents. I mean, there is nothing to tell the medical peeps, but, maybe, with some info from mum there might be a lightbulb 'oh well lets look for xyz'. Maybe not, as it may just have simply been her developing osteo arthritis as she grew older, and probably was that. But the difference between saying 'my mum had xyz' rather than 'i don't know if my mum had that…'

Same as with the children, asking what age they slept through the night, what colour my hair was when I was a toddler, what age did it change colour, was I a fussy eater? Did I struggle to find my shoes when they were under my nose, every single day?!!

Happy St Patrick's Day btw. Normally would have a guiness or a whisky or two to celebrate, but this year I am celebrating with tramadol and an early night

Pavlov, I get the children n questions for MIL. I've had sooooo many questions I'd loooove to ask my mil regarding my DH as a child as I've wondered whether DS will grow out of certain characteristics / behaviours. Whether it is normal.
I had a meeting today to be fd that DS is quite possibly autistic.
Mixed feelings.
Now another wait for a full diagnosis.

goodness it's something you have suspected for a little while though isn't it? I can see the mice feelings, as at least if it's diagnosed as such you can get the correct support at school and home etc? How has he been recently since you came home from surgery and been recovering?

That's right.
Muuuuuch better.
Although did get asked to leave (temporary ban) two clubs within 10 days of my being hospitalised. Nice!
Sooooo relieved to see he's becoming more settled now.

hiya gals, late night lala here. Gosh you lot have been writing alot! well come to newbie rightchoice- second that your gp sounds like an utter only 8 so farknob- I had a bad one on a one off talk about others people's pain and if the pain might stop spontaneously and this group named and shamed him Dr Arse! so I think u saw DR butt perhaps? anyway you do need to get a better one if you can but if not i see two short term solutions;
one- you goto an a and e in any hospital and tell them the whole story and if you get a human being they will prescribe some better meds to last yo a few weeks while you try to sort out the situation better
two- more short term, if you buy paracetamol with codeine you have 8g codeine and 500 mg paracetamol. if you also buy ibuprofen and codeine ( in another shop due to stupid futile policies) you get 12.5g codeine and 200mg ibuprofen in each pill. so then because it is ok to take paracetamol and ibuprofen at th same time you can find out your optimum dose to control your pain- best thing is to get some plain of each as well while you work out the right dose for you, start - if you were taking 2x 8 before then try 1x paracet +codeine 8, 1 x ibuprofen plus 12 codeine and you could also take a plain paracet and a plain ibuprofen with that, if that is not enough, then 4-6 hrs later try 2 x ibuprofen with codeine (will be total 24 codeine), always make sure you never take another dose before 4hrs has passed and max dose codeine at one go is 6o mg,
hth a bit and just post if i havnt made anything clear- although you prob know this all already
similar start to issues as you- I had spd with both my pg's , one in 2009 and one in 2012 but after the first they found slight hip dysplaysia and recntly had a hip op to sort this out. I also recommend pilates ( and yoga though not as helful) to stregthen your core. I did aqua aerobics in 2nd pg and it really helped me keep sane! Hopefully the mri should shed some light on if you have a bio-mechanical issue underlting your spd (as i did). just keep pushing and nagging to get answers and to get better pain relief because i agree with all the others thst the old 500/8's wont do shit for any serious bother.
sorry this getting massive but just have to tell you all that i have found my hoottie stopper`!! yay! so i'm sleeping with prince heat tonite! was starting to burn through more meds while that was gone!
my ds said "I love bubbles" today! major incident ahahah! He had a full dry day too. goodness how are you feeling about the dx possible , love? is it you that has another kid with SN? or am I remembering wrong- I know i'm safe with you, you cant criticise my bad memory eh? that is great you are relatively pain free, hope it lasts and if you have a bip, dont feel bad if you need extra help for a few days. hope you are all having good peaaceful sleep, hope fizzle is feeling better and less pneumonic XXX come and let us know love.
.
oh and firstchoice, what are your foot probs because i have some lomg time ones too- plantar fasciitus and its funny how alot of peeps have foot and pelvis probs sweet dreams all and catch you in the am

Morning Maizie
Yku did make me laugh
My dd is incredibly easy (relative). Everyone remarks on it. I usually get the 'You're so lucky. She's so good!' Thing. Their eyes glaze and I see subtitles across their forehead: 'fucking bitch. I must've failed as a parent.'

Then I rush to their rescue with: 'I have two. I've done my time. Believe me!'

Except, my DS isn't that bad. It's just exhauuuuusting in the sense that getting him to do anything that doesn't appeal is like convincing most children to eat brussel sprouts. And bribery only goes so far. He is very chatty. Loooooves to converse ... about electricity. Pretty much ONLY electricity. Any other conversations you try to have are an irritation to him. He'll maser you briefly but in a panic as won't want to forget the important question he has about electricity.

Ok crikey, goodness, that would be a short conversation with me then.

There are some strange similarities here (or am I dreaming?)

Hip troubles
ASDish sons (hindsight is a marvellous thing, though he may have been plain naughty.)
Shortish stature (again not sure, I'm 5'2" and think others not tall).
All utterly headfucked by the pain cycle.
Several disturbing shopping addictions.

Seriously, though, any of the above?

maizie , how's the pain and the essay?
lost, thinking of you hon.
pavlov, reading your pain description (very ouch) I'm wondering if you need more daytime nerve meds? Sounds very nervy. Any further luck with The Great Injection Hunt? No, don't be ridiculous...
first, can you summon the energy to get assertive and take that NSH link printout to your GP? How could he argue? Take someone with you. I'd come in a heartbeat but guessing you are miles away from London. Tosser. Him, not you.

Hi all, sorry I haven't been on much lately. I do feel a bit that i am not in enough pain! I am not totally pain free but not needing drugs any more. Also have been spending a lot of time watching stupid videos on YouTube instead of MNing. Big gentle hugs to everyone and .

matilda - I am deep in the wilderness of Scotland (nearest train 40m anyone?!), but thanks for the offer. x
Yy to hip trouble, Yy to spd, Yy to asd son (breech, cord round neck, born blue), 5'6 but about the same wide, and Yy to several shopping addictions.....

maizemonkey - thanks for the suggestions re pain relief. I will print out and read carefully. I am going to go back and ask for more pain relief - I had no idea they were fobbing me off with 'over the counter' strength stuff (which would be fine if it worked...).

I think I am going to learn lots here, and am very glad I found you all.x

Take the nhs link above. Bit hard to argue with that. Also say you have taken advice and realise your analgesia is completely inadequate. However, as I said the meds you have recently started won't have fully kicked in yet. So you need anti inflammatories, stomach protector and stronger cocodamol or tramadol.

Funny thing is that when I have the correct strength drugs I generally need less of them because I'm not trying to catch up IYSWIM?

thanks, Matilda, will do.
will ask for omeprazole and and anti-inflammatory too.
I also have feet with problems (totally flat arches now, forefoot equiinus and plantar fasciitus (sp?) so sitting for too long is sore but walking around is too).
Hope for my MRI soon.

OK, just had call back from GP and they have offered omeprazole 2omg per day and Naproxen 500mg x 2 per day. They say I wont need more pain relief if I take these. I asked if it was okay to take these with the Lyrica and Amytriptyline (diff Gp but same practice prescribed these) and she said: 'Probably, what do you think, did the other gp say?'
doesn't inspire confidence...

That is a bit concerning first- to not be sure of their stuff and to make a judgement on your pain(never poss because pain is subjective and diff in everyone) - and without even seeing you face to face. give them a week or two to see if it is enough, then go back, if u r worried about them being reasonable you couls keep a pain diary.
omg you hwve the MIL's from hell, I would be shocked if mine said stuff like that to me, horrid for you pavlov and matilda - hope i remembered the right people, it was an awful way to behave to someone anyway.
like please, pleas, dont think you shouldnt post or feel bad for being pain-free- we would want that for everyone on here and it is good to hear tht it is going right for you. sharing the ups as well as the downs isnt it?
Thanks matilda the pain is a bit better i think. first essay of two nearly done. just find it really hard to focus at the mo- think i also have post operative slump. just tird all the time, no motivation/nergy to do things, just thinking about stuff i need to do can make me feel super-drained sometimes. in 2 weeks time i have no uni for a month so will have less to do so maybe i can re-charge then
:)
matilda you atre so totally spot on about taking less pills if they do what is needed- that is just where i am stuck at the mo but hopefully things will just improve soon. and yes playing catchup is really shitty, you have to scale right back to lying, doing nothing and throwing much more meds than it takes to keep on top of it

Good that you've got some NSAIDS, first, but I agree with maizie that it's nuts for the GP to just tell you outright that you won't need any more pain relief.

The naproxen should help with any inflammatory pain, at least, though for some reason I found it less effective than diclofenac. Better safety profile overall, though, so it makes sense to try it first - just be aware that some people respond better to one anti-inflammatory than another.

I'm one of the ones with a PITA MIL, Maizie. I try to disengage but do find it hard because she can be lovely & then she makes these awful, bitchy, passive aggressive comments that really floor you. I find it harder too because my own mum died years ago - she suffered from back problems - disc prolapses & arthritis - & I know she'd be more understanding. At least MIL is quite a long way away, & I feel fully justified after what's happened in leaving 'phone calls etc. to DH!

I'm fine you lot, thank you so much for being kind to me but in all honestly it is harder living with someone who makes you unhappy than it is being on your own and my boys are so lovely, older so not such hard work and my giant ASD (gets in on the quiche ) boy is very helpful and would also talk about electricity until the cows come home .

I have been at work today! Wowsers and ouch. It was brilliant to do my job though, I really love it. Did I say ouch?

livelab you need to come on more often, not needing painkillers is the kind of inspirational figure we need. How fantastic, congratulations.

firstchoice that sounds great, have a few weeks of taking all that lot and see how it is going, it does take a while before the full effect can be felt as others have said. Just watch how your stomach/oesophagus feels even with the omeprazole.

Right, well that was my five minute break after work and before collecting no 3 child. This is going to be fun, my thigh is almost throbbing with the pain.

live you can't not come and post. You are one of us back pain sufferers, whether or not your pain is manageable, and hopefully you will continue to go from strength to strength and one day be pain free. Then you can be our cheerleader and the one for newbies to look at and have hope that it's not all doom and gloom.

Have I ever said that I don't want to take nerve blocking painkillers? Am I actually being too stubborn for my own good by not taking them? I can't bear the side effects. Nortryptiline is so much calmer than the other ones, but, the side effects still turn me into an airhead, so goddam tired, just more subtly so. I don't like using the word 'hate' and it's such an ugly word, so harsh and horrid, but, i actually hate the way these meds make me feel.

So I stopped taking the nortryptiline. And, as always, am now wondering if that was foolish (ok, I know it was). 50mg slow release tramadol this morning along with napraxen and paracetamol, followed by paracetamol and napraxen at lunch time. Hasn't even touched the pain.

I have not yet decided which of the badness I am more able to cope with a) the pain I am now in or b) the reduced pain and the side effects.

matilda I have not spoken to the pain clinic about the injections. But, I will in fact call them now. I don't even have any will power to speak to my doctor as there is just nothing he is going to be able to do for me. Maybe he can refer me back to osteo for some massage. I am also going to book a chiropractor appt for a deep massage/clicking things into place.

I have on the plus side got my hair done. Lovely 60's style hair cut in dark brown. I am happy this time as I just went and got the director to cut it. And, bonus, he charged me normal stylist price. However, I had plans to get new glasses, make-up on 2 for 3 offer in Boot, then get some clothes as I need some more jeans and work tops, but by the time I walked from hairdressers to Boots and found out I needed an eye test first, I got some make-up quickly and was fit for no more. So. Much. Pain.

Unfortunately the money saved from my haircut was then spent on getting an emergency locksmith to let me back in as DH left the key in the house and our plumber has mine. He is Very Poorly and not in communication at the moment. Wowsers, that was a lot of jeans I could have bought

losty you are a very strong woman.