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!

Here's a grrrrrrrr for Pavlov

The whole ATOS thing makes me weep. My fabulous Fil lost a whole leg from above the hip yet every so often they try and change his disability levels back to relatively mobile, as though by magic he grew an entire leg back. It baffles me. Had similar with Dr's not doing letters for a friend too when it would be done and easy and sort everything out. Madness.

I know Pavlov, one bloody disc, I suppose we could just focus on how cool the human body is keeping so much together for so long but it's no help is it when one bit goes wrong and screws everything up. If it's only one disc how come they are hanging back on injections, surely you would be an ideal candidate?

losty left hand/right hand etc. pain clinic guy didn't want to do injections without mri results (he didn't even ask the doctor/consultant, like he said he would), then next person I saw was nurse who saw he had said wait til mri results. She took this to mean 'no' and gave me some cock and bull story about not being able to do injection as pain is bilateral and the injection is one side only. If mri comes back they can reconsider blah blah. She didn't respond to 'why don't you do two injections then?' and I know that can be done , I don't actually think she really knew the answer as to why so gave me something she thought I might suck up as the truth. and, seeing as it's clear I am never going to get any actual result from my mri other than what my GP can't fully dicipher, they are not going to consider the injection any time soon. I haven't even had the hydrotherapy that I was promised before Christmas, and that the nurse was about in my appt a month ago. it's all so fucking slow, no one is responding to my calls anyway, the last call to neuro consultant had his secretary lie to me and tell me she would call me back. That was over two weeks ago. it as been like 10 weeks since my mri. and they haven't lost it, as my GP has the results he just doesn't understand them enough to tell me more than dehydrated disc, another 'bulging disc' at a different level and some other things I don't understand, but possibly not a 'prolapse'.

I think I am going to ask for all my notes and just diagnose myself.

that's shocking about your friend and ATOS btw!

you know what? I am going to be more fucking cheerful. I vow to write 10 posts without swearing, without complaining. About ANYTHING. Not including this post as clearly I failed that in the first sentence. 10 posts! Can I do it?! hell no I can barely talk at all without an expletive coming out of my mouth these days

Ok, I'll kick off with one cheerful post. Just been playing catch with my schtoopid goldendoodle. I throw, he catches. Lovely boy.

Also, family away skiing so I've had marmite on toast for breakfast, lunch and dinner . Cheap date, me!

I have decided to be fucking cheerful too it's the only way forward, especially as I am watching a program about people being 'cured' by the placebo effect and it is making me unreasonably angry! Bastards Such a shame you are not on my system as my work and I could accidentally send your report and films on somewhere, not that I would ever to that but it's tempting sometimes. I think you can have up to 4 injections at once, after that you are having trouble with excess local/steroid, I think, it's been a while since I was the one in the lead apron not the one with her bottom on show on the table.

I love fucking swearing, I do it cheerfully as well as grumpily, is that ok?

I love goldendoodles, they are just the most cheerful looking dogs, plus I imagine you could ride one in an emergency .

you are absolutely right losty, I love swearing too, that is perfectly fine, and I may well have to edit my previous post and continue swearing, but happily

matilda snuggling with your pooch and eating marmite on toast all day is fab! I skipped brekky, had two bars of chocolate for my lunch but made up for it with 3 mexican tortilla stuffed with a ton of refried beans, guacamole, chicken (a little, not keen on it), red peppers, onions, cheese, soured cream, lettuce...lovely!

My cheerful post is: I have both my gorgeous children in bed with me, fast asleep, gently snoring. I can't take them to their own bed, and DH is out (mondays are going out nights for him) and so I am going to curl up with them! I have been looking at them as they sleep. DS still does the clicking of his tongue from when he was breastfed, DD sleeps with her hands in prayer, always has done. They both look so peaceful, and at times like this, life feels good.

I've just checked on my three, DS1 would kill me if he knew I still went in every night when he was sleeping and said 'I love you SO much' but I can't sleep without it . They are all beautiful and perfect and yes, right now I am happy. Sleep well you lot, in the morning we are going to be positive and get stuff done and lie down when we need to without feeling guilty .

Hi Pavlov I don't think you should feel you have to be cheerful on here, as people said earlier, you can't be constantly moaning at friends and family so you need somewhere to have a moan. But it is good to focus on the things that are good and enjoy them when you can. Just little things like nice food or sleeping babies makes a difference. But moaning and swearing is allowed! I am still finding it difficult to walk a long way, but managed to get all round town today with a few strategic rest stops. I was getting tired on the way back but we stopped to look at back friendly chairs so had a sit down in those. Still haven't decided on one yet.

No more forced-cheerfulness, please! I'll not feel I belong any more.
I am The Official a Grouch - with added sense of humour for 'you've just got to laugh moments / days'. Like now, for instance. I'm unashamedly using my 'new machine'. Programme 9. Had to whack it up to 46 whatever they are (Hz?) to feel ANYTHING. Nunny doc thought I'd be around the 20s.

Bloody hell you lot have got the gift of the gab. I've been out of action for a few days and ended up with 7 pages to catch up on. By the time I catch up I'm too knackered too write and end up back the next day catching up again!
So hi, I've been doing a massive amount of nodding whilst doing my catch up. I feel like a swan most of the time. On the surface people at the school gate, clubs, PTA, shops etc see me smiling (although limping a lot) and carrying on as normal floating around serenely, but under the surface my legs are going like billy-o. Frantically paddling to try and keep afloat, manage the pain, stay upright, fight just to see a doctor and convince myself that actually I just need to stop.
Having said all that I've got too go out now but will be back later/tomorrow to update you with my next installment. Don't have nightmares y'all.

ok. I am not entirely sure I can go 10 posts being only cheerful but, maybe I will start my posts with a little cheeriness for 10 posts...

So, little Ray of Sunshine is - er - er - I managed to get through work, having worked almost a 'normal' day 9am-4:00pm with no lunch. Non-stop, standing for a bit, sitting for too long, standing for a bit, sitting for too long, the lift was out of action for the morning so I started with 6 lots of stairs (is that 6 flights, or 3 flights, never know, anyway a lot), followed by a child protection meeting where I sat til I couldn't take it any more and even my clients said 'oh stand up!' and said to the others around the table, in a protective manner 'she has a very bad back, she had had an operation, sometimes she even has a crutch' aw bless!

Unfortunately, that is probably the end of my Little Ray of Sunshine. As the consequence of that is I am in a LOT of pain. I didn't take painkillers stronger than paracetamol and naproxen as soooo much to do. My workload is probably around 140% on paper, so maybe more than that, added to the fact that I am slower, not hugely, just enough to have no wriggle room. I keep getting these weird mind blanks which I think is related to the nortriptyline? -

I will give you an example. I used the disabled toilet at work, not for any reason other than it was the closest to me. I turned to flush it. It uses a long white cord flush not a button flush. White flush on one side, red emergency cord on the other. I went to flush using the white flush, then looked, puzzled and thought I was about to flush the red, then saw the red, confused again, looked at the white, and forgot for a moment what one I was meant to pull! I pulled the white one, with logic saying it was right, but as I pulled it, I felt it was wrong. It was like I saw white, but my brain registered red? I had to actually shake my head to try and sort it out! I am also tripping over some of my words. Not much, not quite a stutter, it sounds like I am nervous with what I am saying, but it's just not always coming out right. And, I have the shakes. Quite badly, feel it in my legs, but not noticeable, but in my hands, if I pick something up, or use grip of some kind, the shake is visible. I presume it's drug related.

I am meant to be taking the children to a place called Pennywell Farm tomorrow, but, I am not sure I can. I have told them I might not be able to do it but will try my best. Their little faces 'ok mummy, that's ok if we don't go' but so sad about it.

Oh, and DH has buggered his knee up! He is not a complainer when he is hurt or poorly, not really, so it must really be hurting. He was helping someone get their car out of the mud, didn't hit it, twisted it I think (wasn't there) but it's now swollen and he can't really bear weight on it. What a fucking useless pair we are

cowmop sorry things are still a struggle for you. And apologies for talking too much live take it steady remember, don't do too much. town is always a good excuse for a pit stop of coffee many times I find, but it tires me out so i don't do it often at all now. Are you able to get a good rest before tomorrow?

Oh. Oh. ! I remembered a positive - my patent leather black Fly boots arrived. I am going to rock up to work on Thursday for training with them on and my Frank Turner t-shirt on! They are well cool. And I have decided I love the feeling of new boots, so might have to buy more

How is everyone with younguns managing half term?

Shit, Pavlov. Holding your hand. I can identify with the drug-stuped confusion. I tried to pick an almost-empty bowl up while holding a phone. Soup-wall ensued. Thank goodness for dark carpets and wipes.
I hope that you manage to be kind to yourself re trips out and red/white loo pullies.
Hugs

Hi guys cowmop nice to see you, waiting for next installment.
goodness hope you aren't overdoing it with that machine!
pavlov that sounds a bit worrying about the "mental blanks" and having to limit your medication in order to work is not very good as you may have trouble going on working if you can't take all your meds, also some like the Norty(nickname) may work better if you take them regularly. Hope you are feeling better in time for the farm tomorrow. It sounds nice, i love kiddy farms.
I like the sound of your cool work look!

Pavlov hope your dh knee is not serious, at least you have lots of a stuff there like icepacks and things.

live I heard one of my lovely clients, who abuses drugs of many different kind, and refers to them by their 'street' name, say he was taking 'pregabs' and 'codies' (he claims for a bad back ) I know that codeine and other opiates are sometimes abused by drug addicts, but I didn't consider that pregabalin was. I was sat there like this I am not saying he was not being truthful in the reason for it ok, I am as he has form but the casual referral to it suggests it has an street name which means it is abused! wow! why would someone want to feel like that? I guess some people will just take anything available if they can.

I know much of the slang for prescription meds that are abused, which is why it surprised me - Diazepam is known as 'Vs' or 'Blues' (which is 10mg) or 'yellows' (which is 5mg, but they don't bother with such a low dose!). Tramadol is known as 'trammys'. Not sure who said Amy as a name we could use for amytripyline, but that has a street name close to that 'ammies'. So now you know what not to ask for at the docs! I always make a point of saying the medical or brand name when I ask for particular meds, such as diazepam.

I have had weird memory shit with amytriptiline, pregabalin and gabapentin, It was not even like I couldn't remember, but that I would recall the wrong information. And I would somehow know it, but still couldn't work it out. I don't have it as bad this time, but worried that will increase if I up the dose. I am getting better at taking it!

he has an icepack, I have given him some naproxen and some of my codeine. I am a bit worried about it, as I looked in NHS website and it seems to be one of two things that it might be - cruciate ligament, but don't think it hurts enough to be that, but time will tell, or, something else can't recall the name of but is the padding in the knee, which might get better in time, but often requires surgery to fix the padding. No!

cowmop, nice to see you. Sorry you've been suffering.

pavlov that sounds a very tough day. I used to take my boys to Pennywell when they were little! Have lots of lovely photos. Hope you manage it ok.

I'm a bit worried. For the first time since all this started I've got very definite indigestion/ gastric pain. My naproxen is enteric coated and I take my Omeprazole religiously. Am I being paranoid to be worrying about an ulcer?

I'm meeting my Pain Group chums for coffee tomorrow. They are a nice bunch. A bit of a random set of pals but we always have something in common to discuss!

Then my lovely friend is taking me up to London to meet my ds2 to see around his uni on The Strand. Feel ashamed I've never been. Then we are going to Isabella Blow fashion exhibition at Somerset house just next door to uni. I'm super looking foward to it. I'll be wrecked but it's a big day out for me.

I've been with people most of the day and am exhausted. Why so knackered just staying sentient? Early night for me.

Oh dear I hope not the bad one! This just confirms my motto that is "no good deed goes unpunished".

Lol at all the drug nicknames. If only there was an alternative that really worked when your pain is bad.

With the memory and speech problems I also find that in conversation I will think of something and if I don't butt in and say it immediately I lose the thought. It just sort of floats away so I know it's there but can't quite reach it. Does anyone understand what I mean? Or am I senile?

That last post was about pavlovs dh knee.

I suffer with my knee (I'm a wreck). Firm strapping really helps if I need to walk etc. in the meantime yes, ice, elevate and analgesia. Fingers crossed for Mr Pavlov. We need our DH's in good nick.