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!

sorry, posted a zillion times. I am thinking aloud.

Pavlov I think there are more shades of grey to it than I can possibly explain right now. I am currently lying flat on my electric blanket whilst I absorb and extra 50mg of tramadol so I can go out to do an hours football training then come home and lie flat and possibly have 50mg more. I must be insane. Anyway, I will post you what I think when I am sitting up to type. Have a gentle cwtch anyway for now.

Awesome NN there

losty don't overdo it too much today, and enjoy it, especially if you have some sunshine. Did you look at that linky I sent you. I have made myself feel better by telling myself it doesn't look child friendly

One thing this thread has inspired me to do /made me less scared to do is project manage my own care. I'm going to get copies of all my notes and scans as it alarms me that hcps don't read them and rely on my recollection of events anyway. I don't intend actively telling my gp / consultants that I'm doing this as I find a lot of them don't respond well to active patient participation despite relying on it.

Pavlov I would go back to him there's no harm in it but actively start compiling the information and researching who to go to for a second opinion. You simply can't continue as you are. Even if you do all this and there is not a realistic chance of improvement you will know that you tried.

I feel better about all my issues when I can feel that as much as possible is being done to get on top of it. That means work for me too, pacing, fitness, rest etc.

Latest phonecall to rheumies secretary indicates that letter about my scan has been dictated but not typed. She has been ill. We are talking dec 2nd since it was decided scan was needed and jan 11 since it was carried out grrrr.

To be fair to surgeon he went for conservative option, it didn't work, but it was a "good" basis for decision. Do no harm etc.

it's 'invasive' not 'evasive'

carrie thank you for your constructive post! I suspect that those who are used to my writing know what I mean

Hi carriemac, don't think we've met. I imagine pavlov is experiencing the joy of autocorrect. Her spelling and punctuation are both excellent .

pavlov, yes get hold of the report. losty can help you to interpret the findings. I'm hoping it's not scar tissue changes he refers to, though it could be bloody anything. I think you probably need to see him just to really straighten out what he's talking about, what surgery he might consider and all risks and benefits. The reference to conservative treatments is good in that you can call the pain clinic for injections as that's what he means. I agree with denial you cannot carry on like this. It's stagnating with no plan at all.

loon sound like you're coping pretty well. The NSAIDs do work better if taken regularly as it builds up in the system. Hopefully food and Omeprazole should protect your stomach. Re the nerve pain drugs, like Pavlov said there are several. I've been ok on the bog standard ones but they all can and do have side effects. I use gabapentin for daytime leg pain and amytriptiline for the night. I rattle but refuse to live in agony. At least this way I can sort of function. I've also done a Pain Management course which was interesting and helpful. Very Mindfulness based.

I'm off on my fourth social event of the day. Am exhausted with chatting. Must move off my bed and get changed. Loud groan.

Btw is anyone watching Line of Duty? OMG it's brilliant.

And OMAFG!!! A former student colleague of my DH has emailed him to ask if his dd ( whom we have never met, don't really ever see these people) can stay with us for three weeks!

Am I a total bitch for being entirely negative about the prospect? .

I agree denial take control. I think I am going to, if only to inform myself of whats going with me, like you said they don't talk to each other so things get missed. if they joined up the information they might get quicker diagnosis. Almost waiting as long as me for your reply, talk about slow!!! How long til you kick some butt for answers?I can't believe this wait is deemed acceptable when the reason for it is that there is disproportionate and unmanageable pain. ok, i do believe it.

my surgeon has been quite honest, he never gave me guarantees this surgery would work, and it seems it has been to some extent successful. I would just prefer some honesty with what is actually happening now and what to do next if not surgery, not be fobbed off with BS non information.

I think I need a face to face convo with him. I work with people who BS me every day. I can spot a lie a mile off. And I know when I am being spun a line. I just need to pretend I am in his chair as being a patient is different, on that side of the table

x-posts matilda. I will call secretary tomorrow and set up another appt, expect I will wait more months for that {sigh}. But yes to injections!! I just need to find time to make all these calls. It's not easy at work in open plan office to make private calls, or duck out to make them on my mobile. Will have to try.

On a good note, DH has come back with Chinese take away!

outrageous! no way, not for three weeks! how cheeky! you are not being out of order to say No Way!

One hint, yes you can get copies of your scan on disc quite easily but may not be able to open it on your own computer unless you have the right software installed. Still useful, though in case you are ever seen at another hospital etc.

DH thinks I am a bitch ( not used that word but he means it!) so I will be a lovely welcoming hostess and pray she goes out a lot.

Wow a lot of stuff going on, or rather not going on. pavlov sorry to hear your pain is worse again and your long awaited reply from the surgeon was so unhelpful. I think you should reply with that list of responses you posted. Ok you would never get a reply.

loon hi I have sciatica too, but mine is improving. But that leg pain is bad! Have you tried flexiseq which I have found out about on this thread. It is a non drug cream for arthritis that is supposed to be very effective.

matilda what's that MN saying, No is a full sentence.

Oh yes, I love that! 'no is a complete sentence' tell him no, and say 'so, I am a bitch live with it' or something. My MIL stayed with us for 5 weeks once, when I was pg with DD. I was fit and well apart from puking a lot and that was tough. There is no way in this world I would share my house for more than a week with anyone. A few days of alternative company is wonderful (depending on the person, there are one or two family members that outstayed their welcome by a day or two when they only stayed for a day or two) but 3 weeks, for someone who is not your absolute dearest family or friend? And with your own shit to deal with? no way.

matilda how do i get my scan reports and copies of it? Do I just ask for it or do I have to formally request my notes? I am actually quite nosey and interested in reading all the comments about me, so don't mind paying a tenner!

I have cracked open the tramadol. Had a glass of wine with chinese. Put kids to bed. Spun Out! Wow, I realise things need to be simply and linear when in tramadol and wine, no attempting to negotatiate, having conversations that change tack etc, nope. Simple, gentle, not conversations with 4 year olds. I am now back in the safety of my bed having promised DH I would stay up and do MN or something downstairs while he watched Footy. It's too noisy, too bright. Even my cat is bugging me and she is just looming next to me not doing much yet

live hope you are ok? You had a lapse of pain didn't you? Has that improved? are you making progress or has it plateaued? Hope work is not too bad, did you decide to not go for that job you talked about, the one you liked the sound of but your DD was not happy with? (that was you? )

Yes that was me with the job, but did not hear back about it yet. I had a little scare when i got a virus and felt awful and my back hurt much worse but thankfully it cleared up once virus went. My pain is still good I am happy to say, but not really improving, I still get quite achey sitting. But still pleased with my recovery.

I love those MN sayings the other one I like is Did you mean to be so rude? Would be useful with some Drs.

Lost, 100mg Tramadol to do football training. Do you like football?
I can think of better things to take pain meds for. You must fucking love it, man! Watching or training your kids?

goodness she is the football coach! She runs around blowing whistles and shouting at them! I think...

Ahaaaaaa
Oh holy shit.
Hard

I walk almost briskly whilst shouting at kids and bending down too fucking often to pick up the balls 100mg SR tramadol is my normal twice daily dose and I have 50mgs of the normal stuff for extra, which is normally football! I'm more of a rugby girl but two of my three boys are pretty good at football so after 5 years of being on the edges of it now DH and I coach DS3's team because otherwise he wouldn't have a team to play for and as he is close to playing for our nearest premiership team (for the U8's, who even knew they had such a thing?) we do it for him. Although as it turns out I love it so now we have nearly 20 kids running around doing training, almost equal girls to boys and it is the highlight of my week so I neck my medicine and some extra, always keep pretty still on a Wednesday until training and have a great time shouting at small children and helping them learn how to play. If you had told me even 12 months ago I would have done it you would have had a funny look from me! Utter madness

Although I remember I said I would come back and talk to you about your scan but the pre football and post football extra doses have made me a giant wooly head, I will be back tomorrow morning and respond to everyone and be a bit more organised with a notebook as DS3 started puking at bedtime so I will be home all day with him. This parenthood lark is such a joy eh?

Aaaaah such child.
Fun mucky n smelly day for you tomorrow! Hope he is better by morning and isn't ill in the night, poor love (both of you)

losty I would have been very surprised if you were not a rugby girl at heart, being Welsh and all

hope your DS is ok tomorrow. Poor thing!

I feel reasonable myself. thanks to tramadol nice and wooly like you! Except. I am knackered, but awake. wired, but sleepy. How the hell am I going to sleep?! DH has fallen asleep watching football match on tv. I can hear him snoring louder than the tv he claims to be a night owl. Hmm yes. I see that.

Sleep well everyone [zzzzzz]

We do stupid stuff for the love of our children eh? Although DH has been given instructions, towels and calpol for the night shift, I know when I'm broken and done! I've been home with DS2 for a few days looking after him so it's not my turn

Festival with our favourite man at Wakestock looks awesome Pavlov but it's a million miles from here plus very much one for the youngsters, not my cup of tea anymore sadly. Lots of my gang are going to the one at Portmeirion (festival no 6? 5? I did used to know) which looks more my thing nowadays!