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.

nancy sorry, I should know from work to not use shortened stuff/jargon! Spinal fusion. The surgeon will (if it happens) remove the vertebral disc completely and put two metal pins in between the L5/S1 vertebrae and a rod across the whole thing (not sure how but he said hip to hip, not sure if it means into the hip, hope not!) to stabilise the area while the two vertebra fuse together. Sometimes a cage is put into the space between the vertebrae, and other techniques used, but the surgeon has said this is how he will do it if it's done.

gp is lovely, but a bit slow to address things. He understands, he gets it I think, but he lets me take the lead most of the time in terms of what I want. Sometimes, I want him to tell me what I need to happen.

Should read cocodamol 60mgs up to qds (four times a day)

Thanks Matilda

Pavolv, thanks. Just Googled that. Seems success is far from guaranteed though, is that right?

matilda x-posted. Neuro on 9th April. I shall ket you all know how it goes.

I have just bought a prepayment card, the yearly one over 10 months. That's a good deal isn't it? DH is just about to go and spend £25 in one hit on my meds (we can claim it back apparently) so even if I only do 5 times this year I have saved.

I have been so reluctant to do it as not wanted to admit this was not going away, felt it would be a waste of time! GP suggested I get it, as he said it means he can experiment more with meds, as he can trial two small amounts of different meds without it being a waste of money if it doesn't work, before giving me larger doses when we know it's working.

He was actually a gem today. i felt quite nervous telling him everything that's going on, I was worried i would be fobbed off with being depressed, nothing actually going on out of the ordinary, but actually he made me feel better and validated that these things are happening and that he does not think I am depressed, or not coping, just in a lot of pain. I was amazed at how much that helped and I cried even more

I have two weeks off work. I was thinking two weeks, earlier back if needed, he was thinking two weeks, longer if needed!

How is your day matilda pain wise? Another reasonable run? don't do too much if you are feeling ok, keep it Steady

nancy yes that's right, but, the success increases if the cause of the pain is specific. Sometimes it is used as end game when nothing else is working, rather than to address a specific issues, but when the diagnosis is not 100% certain, like non-specific back pain and it those situations, it is not hugely successful.

It is also used largely to deal with nerve pain rather than back pain. But, when there is instability of the spine, it is much more likely to be successful as it is targeting specific mechanical issue. The theory behind it in my case is that it will remove the disc which has prolapsed and may have prolapsed again, but also which is 'sick' and that will remove the nerve pain, and the fusion will stop the vertebra being unstable without the disc to keep it still.

As fusion will increase stability where there is movement of the vertebra it will also help my retrolesthesis - I have an unstable vertebra (which is possibly the cause of the disc problems) and last lot of movement x-rays showed it was not moving huge amounts. But, if this has changed (as GP thinks has happened and neuro said might happen) the metal bars inserted will stop the bones moving around.

But that said, I am not confident about this in the way I was with the last surgery. Not at all as I keep reading that it is not hugely successful. I have to remind myself that I am one of those who have a specific reason for the fusion rather than 'they don't know what else to do'.

That does not mean I will get it done though.

and. Even if it's discussed, I will ask for a second opinion with a different neurosurgeon.

pavlov that's great that the g.p was so helpful, yay. I hope some of those things help a bit. The back surgery sounds scary as always and I think you are right to get a second opinion, after your problems with the surgeon. But it is definately worth considering.

Well that was terrible!

We were split into groups of 10 and given a discussion

I was the only one that spoke in my group!

I kept trying to get them to talk but they were just grunting, saying they agreed with me or saying 'I don't know'

Talking too much in a group interview is terrible -I'm going to be the gobby one now!

Is this the interview for uni 17 or do you have another job possibility? Not very good if they are potential SALT and they don't speak! But sounds like you did well in the circumstances.

Yes it's a uni interview, I applied back in December and have been looking for jobs incase nothing happens

dont think it is bad to be the only one that spoke (maybe because i am super gabby)- because you were being cooperative and assertive which they were not, fx for a good result for you 17
nancy my mix is:
paracetamol 4 x day (usually although only 3 every few days coz i stress about overdosing)
diclofenac 3 x day (after meals easiest)
omeprazole 20 mg first thing
amitryptyline 50mg at 10pm each day
dihydracodeine 1 or 2 x 30 mg 4 times a day
as needed 1 /2 10 mg morphine pill in between other things if breakthrough pain
soon to start- 100 mg gabapentin 3x day
If you are finding the pain hard to cover- remember always "stack" meds-of diff kinds so for mine i never take the morphine with the dihydracodeine (both opiods) but currently first thing I take the paracetamol, 2 dhc, diclofenac all together after my breakfast to boost effectiveness. although i have been wondering if the diclofenac and DHC fight- just took the DHC with paracetamol this afternoon, then after about 2 hrs when aches return i will take the diclofenac. You can do it the other way round and take the diclofenac with paracetamol but DHC is deff not as effective on its own. I have been told to phase out the morphine pills even though i only usually take 1 a day when in between other meds and as i ay "get stuck" with pain- plan to use my hottie to help with this which it is good for but obvs you cant have a hottie while you are out etc (dont think my skin would put up with the patches, very sensitive). The bruised pain description sounds just like what I am getting alot in my hip joints, SI joints and lower back, still wondering if it's nerve pain of some kind.

pavlov if you have always been used to codeine phosphate then hopefully the DHC should be more effective- I found this out by accident ( no help from my GP on that one ) when i got paramol one day as it has DHC in it - it was much more effective and at the time I found the other codeine was getting much less so. I seem to adapt to all these meds very quickly- good for the ami etc with side effects but bad for opiods as they efefectively stop working all together eventually. Because you also had long time of side effects cont. with the ami I am hoping this means you wont adapt for ages and it will stay effective. Hope you can accept the time off and just enjoy it, I feel i have maybe made my condition worse as I also have often done stuff, cont. to do stuff I am not supposed to and I worry I've made things worse but it is not in me to change - I am trying to at the moment but even today have spent too long shopping, accrued much too heavy bags etc, but i did get the bus to get us back home (only length of one st) because I realised I had bitten off a bit too much.
I was describing to my husband that it has changed in my mind how i see the pain. Before you had no pain usually and when it "came" it was a matter of addition, then it would go "away" and you would be back to normal. Now it seems always there. although alot of the time very low level but still "there" and when meds or heat or whatever works it "goes away" - or more accurately it lessens, and then after stuff wers off it is up again- so now it is a matter of subtraction instead- make any sense?

sorry to waffle on

pavlov that op does sound very scary, hard to have to try to evaluate something like that. what strength DHC has your doc given you? be prepared for a stronger constipatory effect, just something from him to help with that. I find senna or fibogel are fine but other people have suggested other options. The hospital gave me lactulose liquid- v gentle but also effective and i had it as well, not instead of the senna.
What experiences has everyone had on gabapentin, wondering how it will be to add into my fruit salad of meds
matilda you call the nerve pain "sicky" and i see why- it is having that effect on me more lately, it only goes away alltogether when i drink alcohol- does that mean anything, obvs i dont drink much or ofetn with all the other stuff i'm taking but wondered if it gave any info.
Havent had pubic bone pain much since i was pg- this one has flared up last week and seems to be increasing- mystery? to me, especially as a while back a physio said it "couldnt be the spd any more" - hmm, advise from you matilda possibly , you prob know more about that than the physios ( although they really should)

maizie the alcohol helps relieve nerve pain as it numbs the nerves and pain receptors. Unfortunately alcohol is a fabulous pain reliever but has horrible side effects.

Might be why I'm just about to pour myself a glass of wine...

ah, that does make sense then. I rang up the orthapaedic dept and managed to ger through and get an appt but its 25/ April, only 2 weeks later than it should be really. she said they have problems and long waits at the moment for the follow up but are trying to reduce the waiting lists for the ops by doing more, i see how that adds up. Glad it's one less thing to sort out. she also said i can ring her if i need any info.
Yes I do find wine will have a beneficial effect but I try to have it for the pleasure not for the analgesic effect iykwim. I sometimes find it can trip you up as when it wears off you suddenly find yourself rather achey-er than you thought you were. I have an awful sweet tooth, if I am trying to be good after dinner sometimes a glass of red makes me less likely to indulge in pudding.
I have fallen off the wheat wagon today and bumped every biscuity branch on the way down! dd wanted caramel digestives and I like to encourage her and ds to chose things in shops so I got them and had a few today and yesterday, oh well, go back to gf tomorrow :) Don't have any bloat or tummy pains so hopefully i've got away with it. Very disordered eating today because we sort of went out to get food, lunch was meagre and she slept 6-8 ( I let her coz i needed to work on my essay) and I didnt do my dinner with hers because she was very tearful from being woken up etc- I think she is a bit under the weather again with cold- sorry for tmi but snot has gone green and this means infection so I will watch out for her tomorrow. sure it will go again, gave her calpol before her dinner and she ate a tiny portion so not concerned. Put her in a cath kidston onesie for bed-(from a sale I'm not made of ££) - looks so cute but I should have done it sooner as it only just fits. when i got it , it was way too big- hate that when u put things away and dont get them out in time for their growth spurts :)

Oh a Kath Kidson onesie! how cute!

Red wine has anti-inflammatory properties, so as well as helping to curb your sweet tooth, it actually helps with any inflammatory pain, as well as the mild analgesic side effects Seriously though, a glass of red wine several times a week is actually good for our inflammatory issues, and a small glass can be drunk on most of our meds (check the ones you take though).

I always have found my muscles ache a little when I am hungover, so if I drink too much now I feel doubly dreadful the next day, but while it lasts it's lovely. Problem is, I also forget how bad my back is so do stupid things, like climb from the backseat of the car to the front seat after DH drops off friends after an evening out (did that the last time I went out and drank) as at the time it doesn't hurt. Payback the next day for sure! That's why I rarely drink, as despite drinking so much as a young adult it did not kill off enough brain cells that I forget hangovers, I remember them so well these days, and hangovers, back pain and young children do not mix well at all

The co-drydamol is working well I think but stronger than I thought it would be in terms of making me feel wobbly (and reducing my patience and personal space to zero!) and it's only 10/500! I thought it was 30/500 but thank goodness it's not! It has helped quite a lot with the pain though, so hopefully you are right maizie that it will take a while to build up tolerance. I didn't consider that may be why the codeine doesn't work so well at the moment - good point.

Ladies, have had word that our lovely friend frozen has been, somewhat bizarrely, suspended from mn. If anyone would like her email address please pm me, I'm sure she still needs our support and can keep us smiling, too.

See you tomorrow everyone. Will respond to posts then. I've had a whole evening of BB. Finished season 4. Awesome!

Sleep well!

wow why?! I will send her a message if you PM me, let her know we are thinking of her.

pavlov I am currently taking the 30 mg ones and though I took one at lunchtime yesterday it was kind an experiment to see if it was enough, I usually need two- so 60mg of codeine each dose (with paracetamol). I remember when I had my CS with ds I got sent home with 500/8's of normal codeine and I thought they were strong! I wish for those days now, why do I have such tenacious tolerance, I know these will only work properly now for a few weeks and then it will be almost useless to take thm , they will hardly take the edge off. I wonder how long it takes to reduce tolerance again? Maybe I could go without anything codeine related and stay in bed for 2/3 weeks and wait for them to be effective again.
I had a forwarded email from cherries about this situation- makes more sense now I will message her too. Bit shitty.
You know we could always just make a private- or not - group on fb, it was good thing to do with my baby group. think of all the lovely orange bag pics. you can always have a find-me thread still here .....

Has frozen been swearing and talking about drugs on AIBU? What is going on? Hope it gets sorted. If we start a fb group or anything can someone let me know? But lets keep this thread going to help any new back pain sufferers.

which thread was she on like? How are you this morning?

Hello all.

I've not posted since last week as have been away.

Thanks for the recommendation of feminax ultra for the Naproxen, it really helped me get through the weekend. I'm going to the GP next Tuesday, honestly the appointment system they have is a joke.

I have been trying to keep moving and busy. Mostly because if I sit for too long my back seizes up and I feel like I'm going to collapse when I stand up, but also because I'm feeling a bit manic. I think it's the Gabapentin- does anyone else have experience of this?

For example yesterday I decided to tackle the spare room where I had dumped the things that I had brought from Mums house when she was dying and had to go into care. I sorted 18 bin liners of "rubbish" and was up til after midnight posting stuff on ebay. It's like being in the manic phase of bi-polar.

I have some sciatic pain now in my calf, so there is progression of the nerve pain. It's not as bad yet, as it used to be. I hope it doesn't get that bad

Yes to the FB group, if anyone can set one up? Sorry this post has been all about me- will go back and read all the posts I've missed in a bit.

Yes to fb group though it would be good to keep posting here too so newcomers can find us.

I'm pretty cross for frozen she needs the support she gets here. I've seen some really horrible comments on mn and don't believe for a minute she wrote anything like that.

maizie, you're a clever young thing! want to set up the fb thing?

pavlov hope you are relaxing. Have you had to make the sick call yet? So awful waiting to call sick. I remember finding myself putting on a feeble little voice on the extraordinarily rare occasions I was sick...even with a broken toe! Hope they are nice about it. The world will keep turning if you aren't there.xx

downton mind your back! Can't say gabapentin has that effect but we are all different. Not being able to sit is such a bummer (sorry!) I miss sitting on a chair on my bottom and never giving it a thought.

Not too good today and had heartburn in the night so too scared to take my naproxen. Sigh.

And my weight is creeping up. Slowly but definitely in the wrong direction. More sighs.

Stop sighing, Matilda.xxx

Have been off MN all week - had a vomiting virus thing caught from DS1 - so haven't caught up with the thread. Did see you had a good appointment with the GP, pavlov - hope the co-dydramol helps. And that the pain clinic appointment goes well.

Just saw the post about Frozen - WTF? I'll PM you, matilda. I can't understand what can have happened. And we're allowed to swear & talk about legally prescribed drugs, surely?

Take it easy, downton. That's a hell of a lot of sorting! My nerve pain is worst in the calf now, I think, even though it only started going that far down in about November, shortly after I had the MRI that showed disc prolapse & nerve compression at L5/S1. I do wonder if it would look worse now as the nerve pain extends further. It makes it so difficult just to stand up. I can walk, with anything from mild discomfort to serious pain, but can never just stand up, still, without the calf pain setting in almost immediately. Weird.

Fizzle, it's great that you're out of hospital & recovering from the pneumonia. Hope you can carry on getting help at home - sounds like you do really need it.

Sorry, have missed loads. A bit thrown by this thing re. Frozen - will come back later.

Sigh. I would love to do more exercise Matilda. I am thinking about a running machine, just to walk on, you understand, as it's all hills around here. I'm not a gym bunny and swimming pools and exercise classes fill me with dread.

I was careful with the sorting. It was just going through boxes and bagging up. How many scarves and hats does a woman need?! I've been putting it off as it's not a fun job but somehow I didn't get too emotional about it. I think the Gabapentin is known to produce feelings of euphoria, calmness and/or a stimulant effect. Apparently you can get a " high" from snorting it- I won't try that!