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!

Fuck a doodle do
If I were called Braveheart, you'd be right to nickname me Foolhardy.
Go on, you know you want to... you told me so!
Thought lessening the pain killers yesterday & last night would help me to feel less groggy today. Now, having been awake since nothing past 4am, I'm seeing the flaw in that theory.
However, I'm not sure why I was awake. Didn't feel 'hip ache' (my old name for the newly brandished 'chronic nerve pain'). Wasn't consciously thinking worrying about CT scan results due in. No more than I have been since last week. Neither could it be blamed on habit, since I've been sleeping well more recently. I'm a bit flummoxed.

Look at the list of drugs you take, you don't even need to read the multiple lists of side effects to know they do more than control (or not!) pain. You have grown accustomed to them being in there and you'll have to gradually become accustomed to doing without some, slowly, slowly, slowly beacause if you are tired or disorientated you can hurt yourself again. I was going to say baby steps but baby steps normally end in toppling over or sitting down hard onto your bum don't they, so NOT like that!

Right, we are going to visit family today, DH's lovely little brother had a horrible accident a year ago and has been in hospital ever since so his mam and dad have moved to be near the big hospital to look after him. This means that whinging about being in the car hurting and sitting in chairs hurting and getting in and out of different places really hurting is just selfish and unproductive, so I won't

livelab I think there is a lot of genetic ability with maths and science, DH and I are both geeky maths and science brains and according to the teachers this has been passed on to all our boys in spades. DS2's secondary parents evening the other week had the maths teacher waving her hand at all his results and A*'s and waffling, 'yes well as you can see, he's good, naturally good, that's it really' we were chuffed to bits but he also inherited his parents lack of people skills so it's swings and roundabouts!

Right, into the car for a loooong day, I will be back a lot later, could someone have the wheat bags hot and ready for me to fall on at bedtime please?

But pls excuse toddler-rant I didn't hurt myself in the first place. I had a tumour. It's gone now. If I had been in pain last night I'd have understood why I woke up at my old crappy 4am. Not done that for almost a month. Confused. Miffed.
Don't want to exist on painkillers just to sleep beyond 4am forever. I had about 2 years of waking from 4 am with 'hip ache' before excision. Sound like an actress from The Exorcist. Or just a drama queen. Just it's been scary. I'm all done now. Pls pass me a bigger broom as want to sweep it under this bit of drape there - come on... I'm standing here, holding it up!

Brief message from the road and not much signal. If I have learnt anything in the last 12 months life is bloody unfair and all we can do is take what is thrown at us. Life is a bastard but it's a hell of a lot better than being dead.

Goodness two explanations I can come up with are 1. You may have been in some discomfort not enough to call pain but enough to prevent sleep and/ 2. Some of the drugs can give you a wired feeling and by reducing others that might make you sleepy and counteract that, it might affect your sleep. How are you feeling this morning?

Lost, well that's certainly true. And it was nice when my DD (3yo) burst in and asked me 'Are you better now?' Didn't grouch to her about being tired. Lol
She told me she'd found it difficult when I was in hospital.

Am zonked. Just as I used to be. And just at the time I usually need to get up n on with my day.

Last day (partial) of freedom! Goodness I really empathise with the desire to reduce meds- I have been trying to adjust every day to only take just enough. It is difficult to concentrate on essays if spaced out and some days the optimum margin time ( able to think but not in pain) has been so short that i havnt got much done. All my rushing around monday made me really achey tues so yesterday because i was at uni all day i took a really structured and thorough approach to my pills and it was so nice to have a whole day without pain beyond a low level. I know you cant make every day like that but it was nice to have one. and i ws still able to cope with concentrating. Think maybe if you let the pain get too far then it takes much more to knock it on the head and then you get spaced out. Maybe try going back to where you know you were ok and only decrease one thing at a time so u will know how it's affecting you? Funny I used to get my hip pain in my pg at 4/5 am every day- what position do you sleep in? It's very annoying when you want to sleep and can't
Hope you are having a fun visit todau

Was feeling very despondent having woken at 4am (onwards) this morning - as has been usual for me over the last two years or so.
I spoke to The Pain Team. So lovely to get done guidance. Can't go back to that life (being so exhausted at the very time I need to get up and on with the day: from 8am). Neither can I accept a life on pills of one sort or another (pain or sleep) at 41! Not when I can't feeeeel the pain.

The chat helped. At least I feel there's something to try and someone to talk to if it doesn't work.

goodness also remember this:

Recovery is not linear, you are still early post op.

Nerves are very slow to recover, so although the tumour is gone the squashed or damaged nerves are in the very, very early stages of recovery.

There is nothing wrong with medication if you need it. Only wrong with taking it for fun. I don't believe you fall into that category.

You have no choice but to pace yourself. (Well, you do but it ends up with you crashing and a flare up of pain). Be strict and plan your days, cut out some things and factor in rests. Having a good day does not mean you are suddenly better, just that you kept your pain under control with low activity, rest and meds.

Accept all the above (very hard) and allow your body to heal and recover at it's own pace rather than a time scale you have imposed upon yourself.

Enjoy lolling about for a bit longer and wasting time on here.

Here endeth the lecture, you can wake up now.

lost love the 'better than dead' comment!

One mindfulness guru said this:

'While you are still breathing there is a lot more right with you than wrong with you.'

It's true.

Smiling at lecture. Thank you.
Everyone keeps driving me bonkers by telling me that I look great. Just makes me feel like I ought to match up to that by not being lazy n taking meds. They're wrong. I was wrong - for now. They're annoying.

Hey goodness don't forget we are all working on being stylish here. But you are allowed to look stylish while lying about if you need to.

had to dash off earlier- my ds has fluid in his Etruscan tubes in his ears and he was crying earlier so had to go off and administer meds. Poor mite he gets really upset- only 4 yrs old so it distresses him a bit. He is feeling bit better now. We are alternating between calpol and ibuprofen, last night he slept thankfully but the 3 before he has been up most of the night. Feel bad that he will still be ill while i'm in hospital but it cannot be helped.

Goodness sorry you are having an awful day- I had forgotten how recent the surgery was, it really was only an eyeblink ago, give yourself a bit of room to heal as it was quite major. I got into the habbit myself recently of thinking maybe it was unrealistic to have "no pain" as a goal and i should be happy if it was below a certain level. I was chatting to my uni lecturer about it and she put me straight because she said if the nerves are showing any kind of dysfunction you need a period of pain free completely so they can learn how not to fire anymore- hope this makes sense. Please don't feel bad about taking meds long term if you need them and remember as well that less pain will allow a greater and more fluid activity and movement day-to-day which is important too. When in constant pain- even low level - it changes how you move, how you feel and how you think and can have less visible but just as damaging effects.

Anyway, have a reprieve for the evening as they have no beds so just have to go in tomorrow. Have to wash in the evening tonight and in the am tomorrow with hibi-scrub and arrive for 7am at guys! so i have to get up at about 5/5.30 am. might be lazy and book a cab, to minimize walking as i will not be able to take my diclofenac in the am, think i can take the paracetamol and codeine maybe? damn, might have to ring and check. no food after 2am, no water after 6am. hey ho, it's hassle but nice to be home longer with my family

Hello and hugs to everyone and hope you are having a good day, Friday tomorrow so have you guys got anything nice going on at the weekend? (living vicariously as wherever I am I will be just sat on my arse).
I am going to miss dd and dd so much- have not been away from dd for more than a night since she was born and she is v clingy and lovey with me but i know she will just transfer onto dh as they have a lovely bond with each other but if i am home she comes to me.

Any suggestions what to watch while i am recovering- i might watch "the killing" as i loved The Bridge

Might not be able to post for a few days as i cant take much in with me tomorrow so just prepping you all for radio silence haha

ps my ds has a wooly hat on in the house to keep his ears warm (mil says it helps with ear things)

might be doing some sofa shopping- but want to hear all your style purchases too. Got a flowery tea dress off new look yesterday, click and collect in surrey quays store until 13/3- should be hobbling around quite fast by then

That was interesting maizie I think that makes sense about the nerves learning not to fire. Also about keeping movements fluid, I think my upper back started playing up recently as my lower back and legs are still stiff and maybe i am moving differently, bending my upper back more. I can see this would happen more the more pain you are in. When my sciatica was really bad i was leaning right over to the left side the whole time to get the weight off my painful area. Even just reducing movement and lying still too much could be bad for you.

Hope DS ear gets better soon. I liked a hottie on my ear when i had an ear infection.

How long are you in hospital for? When i was feeling bad i watched Francesco da Mosta's Mediterranean tour, very soothing i slept through most of it, but the scenery is nice. Dd and I also watched singing in the rain and The pirates in an adventure with scientists.

No idea livelablove as it is day surgery so technically they could send me home on Friday afternoon/evening which I am a bit worried about. i get a diff answer from each new bod. The nurse who rang today to tell me to come in tomorrow morning said she reckoned at least a night , maybe two. It so depends on what they find, how much tidying there is to do and how I seem afterwards. I have heard weekends can be bad in hospitals as they have less staff, hope this will not be the case. I am going to be very incapacitated the first few days. I hav e had a knee op twice (one look see, one to make a new ligament) and remember it was quite heavy but hip is nearer centre of the bod so seems it will feel a bit worse? no real facts to base that on. I am very glad to have the spot as i was expecting to wait 4 months and my pain level is creeping up. had a bit of sciatica yesterday which have not had until now- I can see what a bitch that is, not nice. None today, fx.
Singing in the rain is an absolute classic! I am a film-aholic, love 'em.
My dd (20 mnths) likes Tangled, Monster inc. ,The Curse of the Were Rabbit and Wreck-it Ralph best at the mo. Ds like ralph too, Cars, Toy Story-any no. and they both adore Mulan! (i am a sucker for that one too)
I have a very eclectic taste in movies, almost no genre over-looked. Favs at the mo- Bowfinger, Fear and Loarhing in Las Vegas and The Prestige

I just wanted to post to goodness for now. You must be careful reducing your meds and do one drug at a time. If you are not happy with doing with the guidance of your pain nurses/docs (and I fully understand why) and want to do it yourself, your need to be really really slow at reducing. It's called Titrating downwards (and is often done upwards for some of the meds you are on). Meds such as Gabapentin, Amytriptiline for example have to be done slowly, and you WILL get withdrawal for a little while. They are not just painkillers, they affect how your brain works. They increase seratonin, they decrease something else, they make you sleepy/drowsy, and they Get Into Your System. You have been taking them for a month now, at reasonable doses. If you reduce too quickly you will a) make yourself feel dreadful, b) suffer from sleep issues for a while and c) put yourself at risk of having a seizure as these meds affect all sorts of chemicals in the brain.

I will give you an example of how I titrated upwards on Gabapentin and Amytriptiline so you can see the dose differences.

Gabapentin - 100mg/150mg. Stopped there as I couldn't deal with the side effects. Some people go up to 1000s.
Amytriptiline - 20mg/50mg. Stopped there as I couldn't go any higher (possibly went to 75mg, not sure if that was this or Pregabalin, think it was the second).

With both of those I went upwards two weeks at a time. And was meant to come down 2 weeks each titration. I stopped gabapentin without titrating downwards but only just got to second increase and it was the first one I had taken of its kind so wasn't prepared to give it the 5 weeks I was told.

With amytriptyline I stopped it cold turkey. I was Really Fucking Sick. I didn't put it down to that at the time, it took a few days of realising my sickness was not going away before it twigged that I had stopped it outright.

If you are cutting down from 300mg -200mg that is probably a reasonable cut, maybe a little high, although 50mg is much slower and better for you side effects wise, however, one week in is not enough time ti get used to it so you are in effect cutting out 200mg from your body, that is too quick. And, if you are adding oxycodone to the mix of reduction, that will have it's own withdrawal side effects. This is NOT the same as addiction, it is physical affects as the drugs have different half lives. You may find the final withdrawal of these drugs quite hard for a week depending on the half life, but it's purely physical. So you MUST pace yourself.

There is no rush. losty is completely right. This is the new improve You and there is no rush to get there and risk it taking twice as long. You have HAD to have these meds or else be in huge amounts of pain, especially if the level of nerve damage was unknown at the time. You will be free of them soon, just not as soon as you want.

I do understand. One of my biggest fights with the pain I have been in has been around taking meds that I feel stop me from being Me, turn me into a zombie, change who I am a little and I have Hated it. I don't say that very often, but I have gone through a seesaw of resenting it, feeling so upset, stopping them, regretting it, returning to them, regretting that, coming off them. But, you know that there will be a time when you will stop these. Cling to that, and Go Steady.

It's official. My brains are mashed. I forgot my physio appt this morning. Damn, £45 down the drain.

maizie that's exactly what happened to me! Going in the morning is better. Do take your meds though, that's allowed. I watched 5 series of Madmen in a row. Totally addicted. Everyone else loved the Sopranos but I didn't quite get there. Can't be arsed with subtitles.

In the name of vanity, time wasting and money wasting I had my nails done today. Rather lovely midnight blue Shellac which doesn't chip. Might get a car painted in Shellac next time. Have the nursing class reunion on Saturday. Very excited. Have an annoyingly busy day tomorrow though should be saving myself. So much for my pacing.

goodness, it's hard when you look fine but feel crap. You just have to be honest and say you're in pain and need to rest. We need to think up some good one liners. Any suggestions?

live you are me! I have a virus. And, it has had me all in a tither, stressing that something more is wrong with me, as I always do when I get a cold! I knew it was a cold earlier in the week as I had a sore throat and sore ear, along with fluey symptoms. And then, that throat and ear has gone away and I am left with sore hands, and sore back through legs, but fluey feelings, my fingers are stiff and sore (they often are a little but put that down to typing a lot and so it's not new pain, its just more painful) with horrid pain, and I have been like 'what if my MNers are right?! what if it is RA? and then, as it intensified to the point I felt really bad, I then sneezed a million times!! I had been stubborn and not taken any meds for two days as my back was feeling better (see goodness I said I was bad at taking meds!). I just go to shit when I get a simple bug! (I do worry about the RA thing though as have some symptoms, but afraid to talk to GP for fear of being seen as a hypochondriac)

I hope you are feeling better. I hope it is a bug and that is the cause of your aches and pains. How mad is that, that i hope you have a virus! You know what I mean, better than the alternative.

maizie good luck tomorrow. I hope it goes as well as it can. I am impressed with your planning and how much you have achieved leading up to it!

matilda are you feeling ok lovely? You have had increased pain, have you got it under control? Are you still with the fairies?!

I really want my nails done. But, I have horrible shaped nails and I don't think they can make them look nice

and x-posts matilda you answered my last question to you! I take that as a yes. crap for you

Thanks pavlov I'm ok. Pain has been worse since injection wore off. I'm also fiddling with meds a bit as trialling the sr tramadol but not every day. It's such a saga. I was meeting a carpet saleswoman today at my rental flat and was just so bloody thick at retaining any of the info she gave. She was really nice.actually advised going the cheaper route!

It's just hard isn't it, to convey you are both in pain and have mashed up brains when you look perfectly fine?

Horrid nails no problem. Mine are terrible. I now get acrylics usually discreet pink with white tips but have gone for bold colour. They are a lovely shape. Be warned it's addictive!

I'll be thinking of you tomorrow Maizie, hopefully they'll keep you at least one night to give you time to settle down a bit. I hope you have some suitably jazzy nightwear at the ready, never mind tea dresses!

Matilda it's going back a page or two now, but my patches are BuTrans which is buprenorphine. The doctor said it was a sister of morphine (whatever that means). At the moment I'm wearing 2 lovely patches one 10mg and one 5mg. They have made a difference to my upper back and shoulder pain and I definitely feel less tight iykwim. They relieve the background pain enough to make up for the fuzzy headedness even if I still get the big wollops and wipeouts!

Hope everybody gets a good sleep tonight and remember - just go steady - especially you Goodness

Haha Cowmop
Drugs taken. Tbh I can't remember which is which once they're all popped into the dispenser thing. I've added back the blue one.