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.

Anyone mind if I crash on here briefly?

Chronic back pain, diagnosised by MRI in sept as disc prolapse at L5, following sudden increase in pain and some loss of sensation. (Funny how you can lose 'normal' feeling and still have pain).

Anyway had nerve blocking done then which only lasted about 10 weeks, this was in combo with gabapentine, diclofenac paracetamol.

Had another emergency admission, with more loss of sensation in my leg, foot drop and in continence, referred to chronic pain team ended up on morphine and tramadol.

Haven't been able to work, or barely leave the house for the past two and a half months.

Looking through your posts I've realised that I've been very lucky with my GP and the pain team, I've had very little issues with getting good advice and access to pain control. Only one GP was a bit arsey about my prescription and after a quick call to the pain team all sorted.

I can't understand why some HCP get so difficult about analgesia, I understand addiction, I'm an ex-Nurse who worked with people with addictions. Addicts don't go to physio, or say actually the morphine based drugs aren't working can I try something that addresses nerve issues.

I also have had really good results from TENs, but it took a couple of sessions for it to kick in.

Re: nerve blocking painkillers they can be very individual. And sometimes a slight increase can work without increasing the side effects. Gabapentine did nothing for me at all, lowest dose amitriptaline with anti-inflammatories work brilliant for several years. According to my GP if amitriptaline worked, so should the gabapentine. . . But as I said luckily they're open to new ideas/information.

Oh pavlov, love the intention of so much shopping. Don't think key fiasco counts so jeans should still be given priority . It's a shame that intensive shopping is so exhausting and painful but we should never give up.

The decisions around meds are just unreslovable, I think. I'm in a permanent foggy mess but can't do the pain. All of you that can are amazing. I feel quite inadequate because I really can't stand it.

I've become a passive, sleepy non Matilda person. This is not the life I planned.

Hellovintage, nice to meet you. Sorry you are suffering. It's good to hear you have had good support. I have, too in some respects. Unfortunately it's certainly not a given and long waiting lists are a grim reality.

Hope you have lots of RL support. Back and leg pain are such bastards.

matilda you are a courageous, brave woman who struggles with severe pain daily. I would be amazed if you could cope with the pain without the meds. your nerve damage is significant so don't feel inadequate for taking medication that vaguely help with the pain from that.

I can't bear the pain and I can't bear the loss of brain. I feel myself slipping away when I take it. It makes me feel angry and frustrated that I have to be bound by it. But, that doesn't mean I should not take it. I know it works, as whenever I stop, the nerve pain which had reduced without me really knowing it had, increases when I stop, but it's gradual, and takes me a good 2 weeks or so to realise the link/for the pain to be so bad again that I go 'oh, what's changed?' I am a very bloody stubborn woman who has never been any good at doing what I am told. DD wanted us to look up our Chinese animal information. I am a fire snake. It is soooo accurate.

I don't have any more time to get my jeans. I am doing Forest School with DS at his pre-school tomorrow morning. his key worker is not convinced I will be ok but I cannot let him down. I promised him he can help me make a wizard stick. Then back to work! Maybe I will go online...

vintage we have a lot of this here. Sorry you are in pain. Sorry you need to be here, but it doesn't have to be brief, stick around check this out!

It helps if you like shopping (specifically internet shopping), shoes, cake, talking about drugs the legal kind

Glad you have some good support with the HCP lot, our experiences are not all bad here, some are fucking shockingly awful, some have been amazing, and all the in betweens.

I agree with you on how change of sensation can still mean pain! I remember wondering how on earth my leg could feel completely numb yet still hurt like crazy!

Thanks guys you are great. At least i can still enjoy chatting about drugs lol, as seems a waste of my new knowledge now i am not using them. I still have a stash in case of emergencies but i hope i won't need it.
losty glad you are ok.
pavlov arrgh all that shopping money wasted. At least you can blame dh.

losty you have probably crashed. Hope you are not in too much pain after your work and school run as you sounded in a lot of pain when you last posted.

I am awake. Wired. Fucking tramadol. Why don't any of these goddam drugs put me to sleep? Even the ones that make me sleepy also make me more 'alert'.

DS snuck up. I have worked this week on my week off at getting him to sleep in his own bed all night and not creep in at 4am, which has become 12pm, 2am, 4am, any of those times. it has been hit n miss. He went to his own bed yesterday at 3am without me carrying him back to bed, 'just came to give you a kiss goodnight and a cuddle mama, miss you'. but tonight, a lovely 22:30pm and this little boy thuds into the room gently, looks at me, I say 'oh come on then, only til daddy gets home ok? then back to your own bed' met with the most adorable smile in the world, quick scamper into bed, curled right into me, asleep in seconds. I am using my pain as an excuse t not move him and if I am honest, sneakily enjoying my boy cuddles as soon enough he won't be doing this any more.

live and I do have a billion spare keys now

Can't sleep

Can't get comfy and turning over hurts

Debating if I'll do better on the sofa but probably not

Mmmmm cake.

I really miss baking, can't stand long enough.
The general boredom is amazing.
There is serious crap on TV.

I actually go in for a discectomy tomorrow so hopefully I'll make some progress in the next few weeks.

To be honest if I get to a point where I get back to at least 50% of 'normal' I'd be happy

Wellcome and hiya vintage, sounda all very ouchy, hope you get it under control soon.
oh bad luck about the shopping money lost to the locksmith pavlov, yhings like that are so annoying but you cant dwell. cool you have extra spare keys- I once went out for the day with kids (a while back) and only realised i didnt have key at 6pm, dh was out and had to go to a friends to retrieve a spare with both in tow.
sorry to hear you cant sleep 17, i know that mental arithmetic of bed versus sofa- sometimes it does work better to be in a diff place/position, hope you can work it out and get some zzzzzzzzz's
Ouch all day losty , but sounded like it was worth it, then you dont mind having a "chaise-lounge" day the next day.
I am hardly using crutches at all now. Pain hs been better but I keep yo-yo-ing with (lots on here will know this feeling/cycle) thinking I dont need the next scheduled pill, leaving it late, sometimes it's ok, other times you suddenly have developed an ache etc. but it's a process I know. Today just feeling slightly surreal all day as it feels like I have been on stuff for a really long time now without a break. Has not been as long as most on here - but just what I'm not used to. Just getting a bit fed up with the "unreal" feeling and the rollercoastering from sleepiness, wired ness, normalness, achey-ness and start all over again. These states are not conducive to academia! struggling to do my essays but I asked how long my extension is oday and my tutor said 2 more weeks is ok so I will not stress now, just keep doing a bit at a time, my concentration is buggered up this week. could be post-op slump?
I get that thing about diff pain routes to sensory- also sometimes you get strong wooziness ut can still feel the pain, is that the nerve type?
Ay least I have my hottie back- this might be why i am feeling v spaced becuse hottie helps to get by with less meds and while the stopper was lost ( I keep wanting to call it a "he" I am a bloody barnpot!) I didnt have that tool in the box iykwim so had more meds in the last few days. Have uni tomorrow and that often helps a lot as it is a fab distraction and I can have little rewards to get through the day like proper cappucino! and sometimes cake (shouldnt-wheat! ) or gf brownie!!
I am not often getting hip pain- it is still in my back , just every now and again get a deep ache in the joint. the other day my right hip (good one) was really hurting all day so I didnt know which one to step onto more, quite confusing.
sorry i am waffling on about mysef too much. like it is great you are in a more settled place, long may it continue. Still keep posting what's going on for you, its not all about pain here, lots of shopping talk etc!
matilda you never know you might be right- it's a spectrum so there are myrid shades of gray in btween, not just black and white where ASD and similar things are concerned.
did lots of cooking yesterday- main meals. Made bolognese and savoury mince (for cottage pie) , dahl and cut up veg to make something else tomorrow, maybe stew of beef or sausage. I got these fabby venison sausages which have hardly any fat and loads of garlic and wine in. oh and that night we had grilled lamb steak with red wine jus, green beans and new potatoes.
Have also discovered Nairns new flavour oat biscs with chocolte in, so yum it's untrue [no comment]
I have a tens, i really should dig it out.
pavlov you are such a star to your kids, be careful and hope it goes ok. and hope you got un-wired so you could get some sleep.
I should go to bed too, up early-ish to wash hair before uni, hope you all have a low-or-no-pain-day tomorrow
saw "world war z" yesterday, it was rather good, entertaining apocalyptic zombie movie with better-than -avrage eye-candy Brad Pitt whose wife in it is not so attractive as to ruib your fabntasy of steeling him away haha

Matilda, all similarities but I'm 5ft 5...
I used to be 5 ft 6 AND A HALF
sobs loudly in corner

Could it be this chronic disc/ disk erosion?

Poo

By the way, been up since THREE this morning. And am I gonna suffer! My day to come:
To be awake and yet to know how hard a day I have tomorrow - tough.
9.15 tutor
10.15 nunny doc in London
Home in time to tutor 1-2
Leave for surgeon's follow-up consultation 3pm
Home in time to tutor 4.30-7.30
Leave for new Pain Consultant appt.8pm

Collapse in heap
Thank gd I've someone to take me to each appointment.

Lots of questions for each consultant.
Hope that they'll be able to give me hope re pain and sleepless nights.

Hi Live
Any silly You Tube vids you'd recommend?
I've found:
Ja'mie Private School Girl
Summer Heights High

And if you haven't seen ORANGE IS THE NEW BLACK...
Watch it! (On Netflix or whatever)

Lost, ASD son n hip throb (mine grows vs comes n goes and is apparently chronic nerve pain BUT I RESOLUTELY INSIST IT SHOUKD AND WILL BLUMMIN GO NOW TUMOUR HAS GONE SO HAVE TAKEN MYSELF OFF MEDS ... And am awake from 3/4 am most mornings). Niiiiiice. Can't fave a lifetime on meds.

Seeing pain consultant tonight. Will see what he says.

Whoever saw GP re drugs and was asked 'what did the other one say?'...
INSIST ON A REFERRAL TO A PAIN TEAM. PLEEEEEEEEASE
Claim you're going nuts. Do whatever it takes!

Pavlov, poo to the wasted jeans-money n pain-eaten shopping time. But I'm so happy to hear that you got a (cheaper ) Director's Cut. I find it hard to treat myself and you're so right to.
Except on clothes.
Going nuts on clothes.

Pavlov, aaaaah to the boy-cuddle moments.
Lofty, tell me (pleeeease) - what happens as electro-geeks grow(I refer to my own little 6 yr old Aspie)?
I'm ... worried. CAMHS said it gets difficult around teens. I know that every child is different but...

Vintage, good luck with your discectomy. Hope it's 100% successful and effective, pain free n easy to recover from.

Why...
Am I awake but not in the sort of pain one would traditionally blame for being woken. That's why I can't justify the meds don't want it ongoing, anyway - another hurdle mentally, I'll face IF (Gd forbid I get too exhausted... probable).
(Enjoying overdosing on punctuation though)! I'm sure that it's all wrong.

My (hip) pain is a low, subtle and deep ache. Very 'backgroundy'. But makes me turn over as gets to the point of making me slightly ... nauseous! Weird as it's not a strong pain. But I've had it for a loooong time. Years. WHY CANT IT / WILL IT (????) JUST FUCK OFF AND LET ME SLEEP (meds free) NOW THAT SCARY-TUMOUR IS OUT?
A fat pillow wedged between my knees n ankles helps - a bit. Eases the over stretch I feel in the waist pointing towards the ceiling.
But that can feel compressed with pillowed-legs, too.
Then there's this deep achey thing all around the top ridge of my pelvis.
Blah

Maizie
How do you manage to do so much cooking?

I'm ok baking because I can sit at the kitchen table to do it but anything involving standing at the hob is nigh on impossible

I feel terrible that my dcs eat a fairly rigid diet of 'things I can manage' which I try to make healthy, rather than things we enjoy -that's why we go to grandma's

I don't do cooking. I am married to a chef…

I got to sleep at silly o'clock but after DH put my cute sleeping boy to bed, he stayed there all night. Unfortunately, I woke a billion times anyway due to tramadol still trying to get my brain working I suspect.

I am having my final cup of coffee in bed as an On Annual Leave Person. I am determined not to get up up until 7:45am but I don't think it's going to work. I need a wee.

Not sure of pain levels, but have moved over in bed a few times and not felt huge pain. A Good Sign for my last day on leave!

meant to say quickly, before I actually do wee myself

have a good day everyone, positive vibes for low pain days for you all x

pavlov enjoy your day off. I think you should have another try for the injections. When you have worked up the mental energy for a fight! Maybe you could use the way the nerve drugs affect your mind as part of your argument for them.

Going back to Matilda's list I am short (5ft)and have quite a few people in my family with ASD. I do think there might be a link between ASD and joint or nerve problems, because both are sometimes improved by a gluten and dairy free diet. It doesn't always help I know, but it makes me think there could be a link between the two problems. All this is still not enough to make me give up though! (even tho maizies gf offerings sound delicious).

Bloody hell, you lot were active in the night! So many different types of pain. I've got cramping in my right foot - not had it before & don't know if it's pure coincidence or connected to the nerve pain in the leg. It has gradually moved lower down over the months - didn't go much beyond the knee to start with, then to calf, then ankle. Lots of prickling & cramping on the school run just now.

I'm sure I once read that low back problems were more likely to affect tall people - could have been bollocks, of course, & certainly doesn't seem true on here! I'm also short, 5'4", & sure I was closer to 5'5" a few years ago. I'm guessing that's to do with disc degeneration.

Re. other coincidences - I made a giant vat of dahl yesterday too, maizie! Not all the other stuff though. I'm also struggling to stand long enough to do loads of cooking - frustrating because I love it. Your venision sausages sound gorgeous.

Good luck with the discectomy, vintage - really hope all goes well & it sorts out the pain for you.

I think I buck the trend for height as I'm 6ft tall when I stand straight

which isn't very often

Boo, just lost long ranty post. Lucky for you lot as you won't need to read it.
pav thanks for your hug! it helps. Hope you've had a fab day with your little man. No, they don't snuggle forever so enjoy. though you can always get a dog like me

maizie I love your nighttime essays! keep them coming.. Your cooking sound yummy. How come you aren't even the tiniest bit fat?

goodness, wow! busy day. Hope you have written down all your questions and answers . Big slouchy day for you tomorrow, I hope?

vintage, sounds like you've had a really tough time. Really good luck for the surgery. Word of warning, it takes longer to recover than they say. Keep the next few weeks free.

losty, good for you working all day. Hope you aren't suffering today.

Don't know who commented on sicky pain but yes, yes and also to numb pain. Funny how nobody else gets that or bothers to ask .

I've noticed the tramadol doesn't make me wired but I don't sleep well IYSWIM. I'm going to try (when needed) the tramadol sr about 11ish then cocodamol if I need a top up in the evening. All trial and error.

My MP appt has been changed but in a good way because instead of going to his boring constituency office I'm going to The House of Commons. Got to be a bit interesting, no? Talking to my Pain Group pals today and some have had truly shocking treatment by our 'Welfare State'.

Also feeling ranty because the last tenant at my little rental property has left loads of damage, not paid her last months' rent, left no contact details other than mob number and generally cost me a fucking fortune has made some really vile accusations. Apparently I'm unapproachable, unfriendly, money grabbing and like to keep my property damp and uninhabitable. Umm, she ignored my calls to do an inspection, didn't report any problems and allowed a dripping washing machine tap to cause 2k worth of damage. Oh and she machine washed the curtains shrinking them and left the carpets stained and filthy.

Thanks for listening. She's really upset me.