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.

Matda - I'm open mouthed again (nursing home comment).
I once visited my grandma in a nursing home. Grandma was taken to the toilet by staff. While waiting, I was looking at the fish tank and reached down to pick up a game underneath it.
BASH
I was punched in the nose by a nearby nutter old lady I'd mistaken for an innocent.
Grandma returns and whispers to me: "You've got to watch her!" (Pointing at nutter).
Classic.

Pavlov
I can ot imagine how u feel to want to explain and feel embarrassed. I'm site people get it IF they notice and some just won't even notice.

Oh yes, she's a card, my MIL.

But weird all this coincidental birth n death stuff. My mil died 3 weeks before DS was born. My FIL died 6 months after my DD was born.

At least when I tell my own parents that I'm tired and have 'hip ache' they don't snap back at me any more with 'just get on with it' or 'we're all tired!'

They actually take me seriously - because I'm SERIOUSLY tired and it SERIOUSLY aches. And to think my mum had a go at me for making my initial appointment to see the consultant about it. 'What are you doing that for? They only want your money. Of couuuuuurse he will do an MRI - moooore money!'

Oh Lost. I'm sorry it must be incredibly hard to adjust and let things sink in. How are the DCs adjusting? I'm so relieved to hear you're seeing light at the end of what must've been a dark tunnel together. Will him leaving literally leave you in need of another adult at home to help or was he a useless twat anyway?

Sounds like your mum might be suffering from a severe dose of guilt. Hope she's being a saint to make up?

Good job you followed your instincts.

Ps in my book Serious Ache =Serious Pain and gets treated. I've done too much today (not much) and have Serious Ache.

hello.
can I post my story (much less serious than others here though)
I had two difficult pregnancies with Sympysis pubis disorder which didn't resolve as it should have so spent around 2 years either in wheelchair or on crutches.
Was told SPD had resolved around 4 years ago but left with nagging back as well as very sore hips/pelvis. MRI showed L4/L5 'wear and tear' and lovely Consultant told me to return if no improvement. GP refused to re-refer and spent two years being fobbed off and told to 'lose weight' (fair comment) and 'try Zumba' (by the hopeless physio) - I finally found the Consultant sees folk privately. I scraped all my Christmas and Birthday money but bless him he saw me for free (there ARE some good people in this world) and he was shocked that GP was only giving cocodamol. He wrote to GP to tell him to re-refer me directly to him via nhs. GP referred me elsewhere (!) but I alerted Consultant who put me back on his own list and told me to call GP and ask for Lyrica and Amytriptyline. GP refused so I said I would let Consultant know and GP then grudgingly gave 150mg Lyrica and 20mg Amytriptyline. I am waiting on a further MRI but Consultant thinks it might also / either be nerve compression in lower legs / feet. Only painkiller I have is co codamol 8/500 which doesn't seem to do anything.
Don't know if this is typical?

Oh and not really relevant but we are going to the funeral of a lovely man who died very peacefully at home at the age of 90. His dog, also elderly died a week later.

Sad but rather sweet.

Hi firstchoice - your GP sounds dreadful! Can you change? The co-codamol you have is just the type you can buy over the counter. I have co-codamol 30/500 which is a heck of a lot more effective (though doesn't mop up all the nerve pain). Tramadol might be another possibility - a lot of people here use it.

Goodness, you've got me sniggering again about the old lady in the nursing home. That is indeed classic!

hi, loonvanBoon,
No, cant change practice as in rural area. The Head GP of my practice believes I am putting it on, I think. On my benefits form he put 'she finds it hard to manage the children and claims fatigue'. I will complain formally when I have the energy.... The Consultant was certainly :O about the GP refusing to re-refer to her. I have asked for stronger meds but been told: 'well, I've seen you walk your children to school, so it cant be that bad, can it?'. Grrr.

does anyone know if that dose of lyrica / amitriptyline is standard to start off with, and when I should go back if it has no effect (just started it last week).

Hello firstchoice, we are non competitive here and you sound as if you have suffered plenty anyway.

Firstly your GP sounds like a total idiot. Any reason you can't change to a human being? Mine is beyond lovely. Just tell them you are in intolerable pain and need something stronger. Cocodamol 30/500 x2 is roughly equivalent to tramadol -100mgs. Some prefer one or the other so worth trying both. They both cause drowsiness but that wears off, like amytriptiline .

Do you mean nerve compression in your back causing lower leg pains or symptoms? Sounds more likely than lower leg compression IYSWIM? The consultant sounds nice. Hopefully you will get some answers from the MRI. My personal experience makes me wary of surgery, I'd advise trying everything else first. Injections are good for leg pain.

If you can lose some weight it really might help. I shifted a bit I had gained last year with WW. I still go to the meetings because they are fun.(I don't get out much ) . Pilates is good for core strength and therefore good for backs but must be done well.

If you want to share any more others on here will be happy to help.

What a bastard, firstchoice (your GP, not you, obviously!) - & what a stupid argument that you don't need adequate pain relief as long as you can walk. Is there a reason you can't have anti-inflammatories along with the co-codamol? That would seem an obvious addition along with a stomach protector like omeprazole.

Do you know if the wear & tear shown on the MRI is disc degeneration, or is it arthritic change in the facet joints - or both?

We are all cross posting so so done else might answer first!

Amytriptiline is usually introduced gradually at night. Starting at 10 mgs then increasing the dose up to max 50mgs if tolerated. It can make you feel very sleepy and hung over which is why you increase gradually. I had to stop at 20. It's for nerve pain ie leg pain and is good in my case. It takes a few weeks to build up in your system.

Sorry haven't had Lyrica but think it's another nerve pain drug. I have gabapentin for daytime nerve control. It helps. I wonder if your lovely GP would refer you to a a pain clinic? They are great. Can you take someone along with you for support? Of course you take your kids to school. I'm guessing they are a bit young to take themselves? Grrr.

So, for all round pain control you ideally need a combination: Anti inflammatories, paracetamol/ opiate combination and nerve pain meds. This is very, very standard. Your gps should be aware. If you look at the nhs pages they recommend this.

Good luck.

hi matildacat. Consultant thinks nerve compression in lower legs and feet (I cant stand for long and by evening time I crawl up the stairs to bed - literally - have probs with feet too). Yes, wary of surgery and glad he is doing MRI on lumbar spine to see if further change.

LoovanBoon - think it was disc protrusion and 'crumbling'? possibly nerve entrapment too? sorry, was 3 years ago now, will be good to see what the new one says.

Look down the page at Treating Persistant Sciatica

www.nhs.uk/Conditions/Sciatica/Pages/Treatment.aspx

I love telling people at work when they tell me how much better I am looking/walking 'yep, it's the amazing drugs I am on, completely out of it' They just don't know whether I am being serious or not and their faces are often a picture.

I always find myself in a quandary, dilemma? enigma? dichotomy? what word is it I am looking for? I want to look well. But, I also want to BE well. I also want people to see how I feel. you know, wanting to be two things at the same time. Looking fabulous yet people knowing that it still fucking hurts and it's not all gone away. Mostly now I am over the horrendous acute phase where I could barely drag myself into work let alone look vaguely like I gave a shit how I looked, sometimes didn't shower for days, and I know now that I looked fucking dreadful, I now look presentable at work, usually with make-up, not always, but with hair done, clean matching clothes, showered, looking well.

And to fair on some of my colleagues, (there are a couple of lovely ones, just not in my team, well one is when not wrapped up in her own shit and only because her friend is the other team member who has bad back so she now gets it), a couple of them have noticed when I have been done up with make-up etc and they have said 'oh, you look like you are in a lot of pain possibly when I have too much foundation on and no blusher so i look like a ghost and not taken meds so shuffling

goodness thanks for sympathies about my parents. It's been just over 7 years now so it's less raw these days. But, there are lots of questions I wish she was here to answer, such as details about her arthritis in her back. She had it in her neck/upper back and it developed around late 40s I think. I was still quite young, young enough to not know the details. I don't know enough about it as she didn't really discuss it to know if it was something diagnosed through scans, was it rheumatoid or osteo? I think possibly osteo as she used to say it was due to the window at work being open all the time, but she also had it in her hands and sometimes her knuckles would swell, and I vaguely remember her talking about RA, but not enough to put those things together. She never talked about it, and she didn't ever complain that much, got on with her life, but that was her all over, she kept things to herself too much.

firstchoice, your problem sounds pretty similar to mine. I have a disc prolapse at L5/S1 pressing on the S1 nerve root & causing persistent sciatica (10 months now).

I have been referred for MRI & to a neurosurgeon on the NHS, though, & am now on the waiting list to try a nerve block injection, with microdiscectomy as an option on hold. I had physio. on the NHS, too, though that wasn't much use.

I think it's appalling that your GP has been so utterly obstructive, especially given the views of the consultant. On the positive side, you're on the list for another MRI now, so hopefully things will start to happen. You definitely need better pain relief in the meantime, though.

first what an absolute prick of a gp you have. welcome btw. 8/500 is nothing, a drop in the ocean when it comes to back and leg pain. You need 15mg codeine minimum. You can get prescribed 15mg straight codeine to take with paracetamol alongside or you can get 30/500 codeine. If your own GP won't give you these (which are standard painkillers for back pain according to the NICE guidelines/PCT guidelines for treating back pain, then ask for an urgent referral to the pain clinic and explain that you are not getting the meds you need from your GP. They will then prescribe you everything that will help you to feel marginally better.

We have lots of experiences between us all and a common theme that comes along time and time again from so many of us is that to get the right treatment/pain meds we have to scream and shout, hassle, and importantly, cry a lot.

Gets treated how, Malt? (Serious Ache)? Jeeeeez. You love been busy. Will endeavour to read n respond now (I can hear you all crying "Noooooooo!"). Lol

I have (had?) L5/S1 disc prolapse with sciatic nerve entrapment. I have also had a microdisctectomy which was largely successful in that it appears to have untrapped the nerve, although there is also a vertebral slip there which might or might not be adding to my woes currently and so, although improved and changed from before surgery (couldn't walk for the most part, dragged my leg, agony 24/7, now it's perhaps 50 % improved? hmm not sure right now, huge pain!) it's not fixed me as well as I wanted. They took their sweetass time getting my into theatre though - 18 months from first Major Did Not Recover from episode of pain (had a few before that which lasted a couple of weeks at a time but mostly recovered from).

My pain is high today. It's weird. This is my pain - I can't move my legs far apart as I walk. I am reasonably straight/upright, a little stoop forward which am trying to correct. but, I am walking with my knees a little bent, and pigeon stepping as when I try to move my legs further apart the pain from my spine down my legs is horrendous, as is the jarring of my feet on the floor, or if I straight my legs. The pain is uniform in both my legs, some numbness in my left foot but nothing significant I don't think, and the pain is sharp, electric, like little needles being fired into my nerves. It's not the pain I had before surgery but it's becoming my usual pain, along with the familiar nerve pain and the usual back pain that feels like I have been smacked in the back with one of those iron balls on a chain.

Anyone know what the fuck that is all about?

Lyrica is the brand name for Pregabalin which is similar to gabapentin matilda oooh how knowledgeable are we on our meds

First choice, fucking hell! Why oh why do we all feel we don't have an absolute right to be on this page. Like you've not suffered & aren't suffering enough! Seems to be the right of passage to say 'not as bad as you lot'. Welcome home!
Your GP needs to be shot. Is he in this gig to passively hurt someone?
Thank gd for your consultant. We are sent angels. He's one of them!