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!

I think you just have to relax into that, accept that this is a situation that is going to exhaust you mentally as well as physically but that it is OK to feel like that, it's a normal reaction and you are doing the best for yourself that you can. Things will look up soon, everything is slowly getting better. Does that make sense? My DS2 has been very down, he has had a very hard 12 months which included one of his good friends dying, last week I took him out in the car (good older child talking zone) and told him it was fine to be down, it was normal to be down in his situation and that we would all stick together and it was going to be ok. I think giving him permission to be sad with knocked confidence really helped, for the first time in an age this weekend he took his football and went to look for people to play with in the village. I hope that makes sense. Accept it for what it is, don't worry about it just tell yourself it will be better and it is easier. Then get down the doctors for some AD's if you want to as well, they are bloody marvellous things and will keep you together until you are well enough to mend yourself (your amitriptaline doesn't count, it is too low a dose really). From the sound of it you were working yourself very hard before all this happened anyway so your reserves were probably getting a bit low anyway.

Have fun with the nunny doctor, my friend had a 'device' once to help down there and she said it clicked when she squeezed it right. Sounded hilarious .

Arghhhh! Just lost longish post.

goodness good luck with the appointment do hope your Machine does as advertised. . Re feeling low think that's both normal and inevitable. I certainly did. I wrote before about my little notebook I think. Anyway, I made lists of nice things to do the roped in friends to put the things in our diaries so I had things to look foward to or work towards. It really helped. Some of it was pitifully normal like go for coffee.

I tried to exercise where poss and maintain routine and normality. Also to allow the sadness because frankly it is/ was pretty rubbish and depressing. Counselling good. Might your insurance cover that at some point?

lost re Blue Badge, I have one as does pavlov. Useful things and for me not so hard to get because we are disabled. I use the local (large) park a lot and sometimes park my car next to David Weir the Olympic Gold medalist. I feel a bit 'under disabled' then though he is of course a million times fitter than me! Just different circumstances. Having a BB might enable you to keep contributing to the football training for longer...

If you want any info on the process let me know.

Hoe you all have a good day. I'm being lazy. I guess if it's half term for anyone here that's not an option . I kind of miss those days but not so much

Sorry should have said paralympian, David Weir is the wheelchair racer in case anyone wonders. Otherwise that post doesn't make a lot of sense. Duhhh!

I know who he is, he is awesome. I don't know about a Blue Badge you see, some days I can't walk hardly at all and it would be wonderful but it's almost like admitting I'm broken, I don't know, there's a psychological barrier and then there's the stupid judgeyness from people who don't know like we do . I hate the world disabled. We need to find a better one. Although how I think I am able bodied after I drove DS3 the 500m up to school and am sat here trying to ignore shooting pains in my leg and order Tesco online because I can't go to the shop, I have no idea .

Oh yes, I totally know what you mean. I refused to use the bloody thing at first! Such a head fuck ( excuse the language it's just true).

It does help though and nearly everyone has good days or rather less bad days and bad days. Some days leaving the house is a miracle.

Do you ever get over the feeling that you are just making A Fuss, that other people just suck it up and are fine and you should not be malingering on he sofa? (this is from someone who has seen her scans and x-rays too, I know what they show I just can't help feel I should stop being so bloody wan!) Urgh, I'll inbox you about getting the bloody thing!

Matilda, I'm hoping that Machine does more than advertised. Lol
Only kidding. Now that WOULD be embarrassing!

Quick question: they said to wear hospital socks for 6 weeks post op. Do I really have to?

I know they are grim but I would rather that than having a blood clot which could go for a wander and make even more trouble!

oh yes Goodness those socks are so sexy! not! but they are worth wearing to avoid clots. I had them on for weeks at the end of my last pregnancy. Some even advocate them for anyone staying in bed alot due to back pain etc.

like should I say to my doc " come on doc the Amy's not enough, slip me some dizzy mate?" - probably not the best tack- you are right not to sound TOO knowledgeable sometimes but i usually just quote my mum as she has extensive history, back issues up the wazoo etc. She also has one leg a bit shorter than the other- it obvs causes problems.

lost so sorry to hear about your son, how sad for him to lose a friend so young. I would find it terrible now as an adult. My afore-mentioned mum also has never gotten a blue badge even with all her daughters nagging her to- she says she would feel a fraud but she has limited walking and doesn't do long distances of walking without it giving her alot of pain.

I think people with ongoing stuff get so used to coping that it becomes normal. Her epic problems have also made me feel like i should't complain as it is nothing compared to hers. Saying that she has been a big help and support over the phone because she does understand all the issues we are going through- just hers are more major. But then i am only 37 so it is relative i guess.

I am rather achey today but it is totally my fault for picking up my little girl too much this am- it's really hard to keep saying no sometimes. Massive spoon-management fail i'm afraid.

goodness sorry to hear you are feeling down, it does gring one down and this time of year doesnt help as it seems to match how you are feeling. Hope you find something today to make you feel good. It's something diff for everyone but for me i will put on comedy shows sometimes. Exercise used to be a big way to keep me on the right keel emotionally but that is no good right now apart from swimming and pilates. i used to in-line skate but that is out now really, might fall over!

I have had a great day: physio appointment meant dad took me out in his car. Managed to get him to stop on way home for fruit, a peel in fave clothes shop next to grocer and doctor's, mini Tesco and pharmacy -all in a row next to each other. Am now paying for it in fatigue. Came home and did nunny machine and ALL usual Physio exercises. I'm an idiot. Ate. Now in front of the depressing breaking bad that I now have to finish watching seeing as I've made it to Season 5 -wasting hours of my life I'll never get back--.
Pharmacy told me that I vs. get hideous stockings in prescription. So, went back into doctor and asked receptionist roads some as (drum roll) my 12th item on my list of repeat prescription meds.

Yay, hideous stocking win . Glad you have had a good day though, sometimes you just have to enjoy yourself and just take the pain and tiredness to pay for it. Sucks but there you go. (Sorry, I am in a grump, there must be a nicer way of putting that). Is it worth getting started on Breaking Bad then, we were given the boxed set but I was so horrified by the violence in the first episode I had to stop watching. I am a wuss.

Just back from rheumatology clinic with the awesome news that there is no way of making my back better just ways of 'managing' the condition, I don't know why I was optimistic enough to think there would be really, just thought maybe reducing the inflammation would help somehow? Anyway, I get to keep taking the foul medicine because it keeps the associated irritable bowel disease (the glamour) in check and has stopped me being so tired and maybe possibly will start helping with the hands and feet and wrists and ankles. For the back and the SI joints there is only pain management. Happy happy joy. I may be feeling a tiny bit sorry for myself, somehow I hoped there was a magic wand that would make it all go away. Bollocks. Cwtch up Matilda we can grow crunchy and old together.

lost, did they mention anti tnf? maybe they reckon too much damage already done? that's shittier than shit but probably what I am going to hear on next appointment hello and welcome to the newbies, goodness you are really doing great don't underestimate it.

losty I Always feel a fraud, and that perhaps it's not so bad and that I just don't cope with it as well as others. I remember though when I first had sciatica, but no back pain, before my back problem became 'problematic' just went every few months for a couple of weeks, I remember thinking then, that it's just living pains, that everyone must have pain of some kind or another and that I was Making a Fuss. I didn't go to hospital when I couldn't feel my leg at all, as I felt like I was making a fuss. And I don't see myself as disabled, although, at the moment I am, as I don't want to be. I have a blue badge. It is marvelous. It has meant that sometimes, I will pop into town as I don't have to park miles away. It means I can go to the Eden project or other places that have long walks to the entrance, with the children, as I can park in the spaces closest, things I had started to avoid because it as all too much to get there with pain. I can sometimes take myself to work without relying on DH as I can park at work (like today, children in half term, didn't need to drag them all out to take me to work as I can't use the bus easily, it jolts and then I have to walk miles) It means sometimes I can do a little bit of shopping.

But, I still feel a fraud, and if for example there is only one space available, I won't use it, as there may be someone who is 'actually' disabled who needs it. On the days when I walk ok, I just don't use this spaces at all. But, actually by the time I have done the shopping, I regret that as then I have to drag myself to the car!

It is ok to do normal things with a blue badge, just because you are working hard to have a life it does not mean you don't need, or will benefit hugely from the badge. You can also apply to your local council for free bus pass if you qualify for the badge, so for those who use public transport, it is worth applying for a blue badge even if you can't drive or don't usually drive.

happy happy joy that's Ren and Stimpy!!

Aaaaagh
Brain exploding. Was hiking to respond to parking fraud bits n now my mind has diverted to 'worth starting breaking bad' stuff.
Well, your DH will prob get hooked on it forcing him (and u) to buy the rest. At this point, consider subscribing to Netflix who have all series on there. I think that netflix also have a one month free thingy. Not sure about any tie ins with that so, be prepared to become enmeshed in violent and dark world of drugs n swearing (swearing may b nothing to do with BB - but all of my own making as result of my own recent experiences).
Anyway, and I'll get roasted for this, see my recent BB AIBU post I think it's been a hugely dark n negative waste of time BUT it's wasted a huge amount of time that needed continuous distraction (the op). Pros n cons.

I sent form for blue badge off before op. At that stage I didn't have too much pain at all but on occasion was reduced to tears of frustration held back only because had kids in car who were almost always late for their wotnot classes because I couldn't face shlepping them all the way to the entrance from the car. Think I just didn't realise how hard it was n how much I was struggling from years n years of 'achey hip' (since diagnosed as chronic nerve pain).
There you go.
So now, if I need the space, I'll use it. If there's another one at manageable distance, i will use it. But I don't LOOK like I need it which is embarrassing if I care to consider what people might be thinking (less so of late). Then again, I don't look like I need to go to slimming world, either (keep going cos I'm a pig who can put a stone on in two weeks).
There you go. More drivel from me.
I also feel a fraud on here cps I don't think I've got it bad compared to those who have ongoing stuff n I hope (like hell) not to.

"hugely dark n negative waste of time" lovely, that is a perfect answer, if I am going to waste my time I will do it with something lovely and wafty .

Denial, I don't know about the anti-tnf. I cocked up with my appointments (this is my third appointment in two weeks, I'm a bit mixed up!) and only realised I was supposed to be at an appointment 45 minutes away 10 minutes before the appointment, they were awesome and said come anyway we will juggle things and see you when you get here, so I jumped in the car, pegged it there in the pouring rain and wasn't organised with a list like I planned to be. Plus there was the whole IBD issue which threw me, so when they said they weren't expecting the sulfasalazine to help with my spine and SI joints, there would be no cure just keeping things as good as possible I went blank. Bugger bugger bugger bum. The damage to my spine is visible on x-ray for the whole of it though so there is no mending that and no injection pain relief for that many different spots either. Fuck. Sorry, I am a self obsessed muddle head his evening.

Big hugs from one muddle-head to another.
Can't count the things I've bodged up including having arranged for my parents to have DCs and DH to take time off to look after them all at the same time.

Anyway, ignore my ramblings. It's all good, that is a known so I can get to helping myself with good pain relief, physio and injections, it's a focus. The other bits and bobs (peripheral joints as the radiologist called them on the report when I think she had got bored of naming them all ) will probably eventually be helped by the Sulfasalazine and if not I shall start making a list for the next appointment in my phone so I am not caught out again.

I love that you doubled up on babysitters, getting one at any set time seems like a miracle!

Well, I was pottering around this morning before getting really sore so took my slow release tramadol then rested on my bed to allow it to kick in. Next thing I knew I'd fallen into a drug induced coma fast asleep and felt utterly stoned when I woke up and the thought my planned swim a poor idea so had a bath and watched Call the Midwife instead. Oh dear, another day wasted (!!!!). It's annoying, though cos sometimes I'm fine on it and it's good then other times it knocks me out anyone else had that?

Yes, yes to am I making a fuss. In fact if I have even a few hours feeling okish I think I must be imagining the bad times. That's after two solid years of severe pain! Slow learner huh?

I agree about looking perfectly ok yet needing disabled facilities. It's weird. And I insist on hair, bit of slap and halfway decent clothes so tend to look rather well. All very difficult.

goodness wow busy day. You'll need a quiet one tomorrow.

Steady, ladies, steady.

I think I'm making a massive fuss even though I have seen with my very own eyes the bone scan I had, I seem to forget it the minute it's not in front of me and think I'm making everything up! Deffo good call not going swimming when you were feeling utterly stoned though . My best ever thing was finally getting a new up to date TV this Christmas with a sky HD box. I can search for things I like and everything. If you like Call the Midwife did you see Bletchley Circle when it was on, that was brilliant.

matilda that's the problem isn't it, we are expected to look like we have disabling pain. And not look like we might enjoy any aspect of life if we are to get any tangible support from it such as blue badge. No, if we are to utilise benefits for us, such as a disabled loo, parking spaces, having a till opened for us (that happened in M&S, forgot to mention that, when I had my crutch and a Really Bad Day, and there was a queue on all the other tills), then we must be visibly, undeniably, and badly suffering more than others, in order to be deemed worthy. Well, fuck those who think we should, i try to add a bit of slap too, do my hair nice, hide that I am on shit tons of painkillers, smile.

I can't sit. It's painful. The nortriptyline is clearly dampening it down, as I have numb patches on foot, and occasionally leg sort of stops working/feeling for a few seconds, but the pain is not as bad as it possibly should be! But sitting is. And, as I almost found out, there is a tiny section of bending/leaning where if I do it, I drop what I am holding due to sudden pain. That position is when I holding a cup of coffee and that tiny bend/move to put it on an office table. I almost dropped a whole coffee onto someone's paperwork as I gave them a cup of coffee as my back gave way! Oops!

Oh, and called the ATOS dept responsible for my nhs ill health retirement application today to find out what's going on. It's been a few months now. So, nice lady in charge of my case and she actually seems very familiar with my case. So, she says the assessing doctor is minded to approve but needs further report from my London hosp pain clinic. Trouble is the consultant who assessed me has left ( they have a copy of his letter summarising my meeting with him). The new consultant has ignored their request and after numerous calls the ATOS lady has been told they won't provide a report. WTAF?! I'm practically a colleague. So I'm asked if there is anyone else I can ask. I have given the details of my nice psychologist. I know she would be supportive so hope like mad they ask her.

Sorry, that's very boring but sooo frustrating. Why does it all have to be so hard? Isn't life like this bad enough. Methinks the pain consultant who won't do reports needs a visit from the Mumsnet Pain Device.

pavlov can you increase the dose? I know with amytriptiline I had to increase the dose as my side effects decreased. Sorry it's so hard. Not being able to sit is such a bloody drag. I actually can't bear to think that I will never sit down comfortably for the rest of my life.

He is minded to approve - so just bloody approve it then! FFS, if he is minded to approve, it means that from what he has seen from what information he already has that there is enough to make a decision to approve, or else he would be saying 'i'm not sure, need more info'. So, why the fuck doesn't he just put the stamp on it i mean, if he is thinking of approving, surely the pain clinic can't give him more info to say 'well, i did think this was appropriate to approve as clearly all the evidence suggests this woman is not fit to work, but, now the pain clinic have said blah blah (which is not going to be anything that conflicts with what has already been proven to be true), then, oh, I have changed my mind?' The only way that would be the case is if they said 'matilda? oh yes, she comes in, skipping rope in hand, positively beaming, and while waiting, skips to pass the time, or runs up and down the corridors to keep fit'. All this bureaucracy drives me nuts.

I am taking a step back from the bloody lot of it. My lot are clearly of the opinion 'well she's had the bloody op, what more does she want?', like my hairdresser, did what she could, but when it didn't work as planned, did not know how to fix it, so left it as it was and ignored the problem. I have no energy, or time to fight anymore. I am either in too much pain to drag myself forward to see medical professionals again, or call them, or I am back at work trying to rebuild some professional standing, or I am being taxi to the children. No-one's listening anyway, so what's the point.

matilda x-posts - I expect GP will suggest that, I need to get a repeat prescription so will call him and ask what he thinks, I just don't want to go higher, as the side effects are manageable now, groggy in the mornings and I forget most things before I can write them down at work, I lose track of what I am doing, like, opening Word 3 times when it is something else that needs opening, and looking like this at the screen when it's not what I wanted. But I am managing that ok ish, just looking like an airhead and talking to myself a lot as I realise my errors.

It is easier, and the last episode last week has eased enough that I can be at work, but, I know it's going to go again as that flu feeling in my back has not really stopped, just subsided. It feels like it has not fully recovered from the one after Christmas, just kept at bay. Oh I would give anything to have that post-op pain back! When there is no nerve pain and all I can feel is everything 'recovering' and that small window when I felt good! I don't even wish for 'back to normal' really now. I can't ever see that happening.

it sucks doesn't it. it's just one poxy disc. messing up my entire life.