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!

In the past I've taken Amitriptyline quite successfully but came off it as I had improved significantly

I have various concoctions of diclofenac, codine, tramadol, cocodamol and oxycodone depending on what the cause of the pain is -and obviously I manage these carefully

I also use a tens machine and heat and cold pads

I have some pretty hefty meds so I prefer to try tens etc before I hit the painkillers

I'm going to see how I go over the weekend then see what I can sort out on Monday if I'm not seeing any improvement -I haven't got time for this at the moment

Yes 17 we like long posts, mine are short because I am on my phone and it takes me ages to type. But I like reading what everyone has to say. Sorry to hear about your problems, I have sciatica too it is horrible. Mine is a lot better though hopefully yours will clear up again soon. Do you find it goes away despite the MS? Does the MS affect what drugs you can take? I found naproxen helpful I think a lot of inflammation was involved with mine.

Where is Losty, is she lost (stupid joke) or has her computer broken arggh.

The type of MS I have gets better for periods of time and then gets worse again -sometimes the sciatica is a pre warning that I'm due a relapse so I hope that isn't the case this time

The drugs for MS are often the same as the things I take for my back which is handy as I generally don't tell people I have MS and its much easier to tell people I have a bad back! so if anyone knows me in real life shhhhh

The sciatica rarely goes away completely and certain things will always trigger it -standing still for too long, walking slowly, carrying shopping in one hand -but when it's mild I can cope pretty well even though I'm always aware of it

When its bad though its constant and it takes my breath away!

Heeeere! Was just about to comment! Bit of a wooly head at the moment but reading this it's probably because 150mg tramadol is my normal dose right now

Been reading all the comments but not posting, having a 'poor me' few days because my SI joints didn't seem to be much better after the injections but I am having a slightly optimistic day today with the pain tbh trying not to over think things. It sucks, and I can see that from all your posts recently, the pain recedes, you feel a bit of relief and see a light at the end of the tunnel then BAM back again, that bit crueller for the moment of peace. Saying that the most pain I get at the moment is from my 7 year old, they can be buggers at that age!

Dead hand wonky sit is THE most perfect description of the fist to the back shuffle in hard chairs. I think a few of us are experts at that. I was astonished at pain clinic because I had to wait 3 hours from booking in to my turn, they expected me to sit in a hospital waiting room chair all that time, they gave me a pillow so I moved around with that but the (slightly) offered 'tell us if you need to lie down and you can come into recovery and use a bed' was daft, we're British, no WAY I'm going to come into the post theatre ward and make a spectacle of myself by lying in a bed pre op, heavens!

I will do proper posts tomorrow, I'm reading and nodding to everything but not retaining enough information to be sensible, I will be back with a note pad and pen tomorrow and talk properly.

I was sat on a birthing ball last time I went to the pain clinic -those chairs are crippling and I don't care that I looked like an idiot!

That is such a good idea! Did they have them there or should I add to my british embarrassment by waddling through the hospital with my own?

I took my own after sitting there for 2 hours the time before

I gave up worrying about my pride, I'd rather be able to walk

I sit on my hands too! or, at work the other day when that didn't work well enough, I stood against the wall. In training, with 10 others or so, then in a 'team' of 3, just said, I am going to have to stand here ok?! not that they had a choice. I pretty much stand at work the whole time now.

I feel floaty. But wired. I forgot what tramadol felt like! I know I won't sleep on it.

I just looked at yurts! the one I want is available! I want to book it now!! But, Dh wants to talk US with his mother first, as he is not 100% sure she is up for it for real, she told me she wanted us to come and have our summer holidays there with us, but, she is 80, is forgetful and I wonder how much of it was said in the heat of the moment. She said 'talk to dh about it of course' but she hasn't mentioned it herself. She lives in Santa Fe though, which is beautiful and she has a lovely big house, all on one floor with ensuites so no walking up and down stairs, can get dressed and take meds before having to surface etc. So, on one hand it will be lovely. Being there is not the problem (other than jetlagged me and the children), it's getting there and back. One time we went, london-san fran flight was delayed by 2 hours, on the tarmac, we missed our connection, had to stay in a hotel until 4:30am to get the 6:30am flight next morning, to Denver, then another flight to Albequerque. Luckily at the time that is where his mother lived. Another time I went (pre children), I was not allowed on my connecting flight, I got 'bumped' and so I was very upset (first international flight and on my own as DH had gone ahead as his dad had died) so two lovely americans took me to the bar and we got very drunk . I am not sure we have ever had a straight forward flight. We had all our luggage lost once as well. Returned to us by courier the day before we came home we got re-embursed for essentials we had to buy though by our insurance company, which was quite a lot as it had all our baby stuff in and DD was only 5 months old. Shame, having to buy all new clothes in US

i should take my pilates/birthing ball into work with me

oh. just reminded me. I had a lovely experience today. I had to use my crutch as couldn't move my right leg much as it hurt/hurt my back to move it. DH went to do some shopping in sainsburys at 5pm, I took kids into their cafe, they had their tea there, I had coffee. The lovely lovely man behind the counter said he would bring it over, then, even though there was a queue, offered to go and get me some milk, then to get the children's drinks that came free with their meal and I didn't realise, but it was at the other end of the cafe, brought several flavours for them to choose from even though I said get whatever, and also got them the fruit they were to have with their meal as I forgot that too! He just said to those in the queue 'please excuse me for a moment, I won't be long, I am just helping this lady' or something like that. Lovely young man! I felt like a bit f a burden, but he didn't do that, just my own sense of guilt/fraudulentness, he went out of his way to help.

And DD, she has been wonderful, helped me out of bed this morning, took my shoes off this evening, put my slippers on me, carried my bag when we went out today, brushed my hair, offered to run me a bath, all without prompting.

Hey guys- you're all up late tonight. I am always like this. Sometimes because I am studying, sometimes one of the kids is not asleep, sometimes have the "wired but floaty" going onlike pavlov from codeine and/or amitryp. Today has been really weird day. Napping in the day makes life a bit surreal. Didnt mean to sleep the second time but just got very sleepy reading. Having weird vivid dreams still- more so, think from the Amitryp, and wake up feeling spooked but unable to verbalise.
I think I have the same thing with not being able to remember words as well.

Saw doctor this am- stupidly booked it at 8am thinking i would be at uni that morning but i'm off uni this week! idiot me! got a prescription for codeine but only 15g x 30- might try to not use it and keep it for after op- I am just very worried about being stuck in a position where I have inadequate pain relief. I did say this to him and he tried to reassure me that they will be used to doing it for lots of patients and will know what they are doing. Hopefully i am just being over-worried about it. Don't mean that I dont respect their ability it's just based on experience after both my kids' births but he said that is a very diff situation and midwives can be a diff kettle of fish wrt pain relief. fx

Damn, my daughterhas been sick all over her cot- just finished clearing it up with my dh, bleurgh. thought she was better, bugger. hope that was it for the night
Hope yu are all happily asleep [sleepy emoticon]

and ps how is your dd's wrist now pavlov hope it's ok

Pavlov, what a really itching moment or three in the cafe - and your DD was a real gem last night.

There I go again - fat fingers (must be getting better as used to b quite usual for me): touching.
Not itching
Lol

Maizie, hope that was the last of the sick. Yuk
All that bending over, too!

Pain relief is taken cafe of well in my humble experience. I too had shockingly-shit midwives and waaaaaay too much pain during labour etc. but felt nothing (once pain was identified as nerve pain) after back op. They have something called a Pain Team. And the nurses will be aware of your pain too as you'll be calling their buzzer about it if not.
It's a very different set up to maternity wards. Instead of 'healthy baby delivered, minimal intervention or pain relief given' it seemed to be 'drug her up and help her to sleep' (apart from the zillion blood pressure checks, 'meal' offerings, etc.

Drug her up and help her to sleep sounds like heavan! Which hospital was this, I might have a visit!

I hardly notice the tramadol floatys now, apart from a little patch in the morning where my head seems to take 5 minutes to 'adjust' the rest of the time I feel 'normal', well for me at least . I have been on them so long it would be interesting to have a day or week without to see the difference but as missing a dose by and hour has me tearful I think we'll leave that for now! Funny how we adjust, a day where I 'only' have 200mg over 24 hours is a really good pain day now. First big test of the injections today, futsal tournament with my little team, normally by the end it feels like caustic chemicals are being injected into my SI joints, they burn and that's me done for the rest of the day. Fingers crossed.

I hope your DD is better today Maizie, I hate sick with a passion! Pavlov what a lovely experience in the cafe, gives you faith in human nature, maybe he had a mum like us and it's made him a lovely compassionate man. DD sounds like a lovely girl too, you must have done a great job with her, you wanna borrow my DS3 for a bit to train him up?

Pavlov my work actually provided me with a ball after an OH meeting lol

Interesting how you were treated with your crutch -I occasionally use a stick which is largely ignored and I have to do some stick waving to get a seat on the train, maybe I'll have to get a crutch to see if people take a bit more notice

maizie you will be fine re pain relief, and they should send you home with some? When I went in for my op I wrote down what meds I was taking and they made sure I had enough of those when I left. A specific person came to talk to me about take out meds (like ordering curry!).

I will defend midwives a little here, especially as we have one amongst our midst and say I have had better treatment from my midwives with both my children than the aftercare of my last op. I think it is so dependent on the person as well as their role. My first birth was lovely, BUT, I did have my best friend as an advocate who is a nurse herself and she insisted they give me gas and air when they suggested I wait (but were happy to give me diamorphine straight away!) the initial most likely tired but reasonable midwife left at end of her shift and I had the most amazing midwife. My baby was her first delivery since returning from ML that day! I had wanted to have quite a natural birth in terms of walking around etc but couldn't, so she held the heart monitor on my belly so I could stay on all fours as long as possible, she made us all tea and toast and we had a good chat as things slowed down for half hour, I remember her being there pretty much most of the time, and she came to visit me on the ward after to give DD a cuddle and say. Charlotte was her name. Second time, I was refused diamorphine, the midwife made out like I didn't need it, but after DS was born she was very apologetic, said there wasn't enough time but didnt want to say in case I slowed down! She was much more business like and less 'involved' until near the end, but, I think she fed off me as I didn't want to be fussed that time, I wanted to just be left to get on with it. And the midwives on transitional care, where I was with both babies - wow, with DD in particular, where I was in for a week, they were the best, that was such a lovely experience and I was so disappointed that the other non-maternity wards were not so loving and caring. But, of course I know some people who have had good and bad experiences both maternity and non-maternity.

I went to bed at 00:30 last night unheard of! DH let me lie in this morning, brought me toast and coffee and my meds. I felt spun out most of the night, but do remember that passing quite quickly last time, I was able to work on tramadol which I can't do well on codiene. I wouldn't have been able to last night though, so hope that passes quickly!

17 i probably need a stick tbh, although I needed to bear a bit more weight yesterday so crutch is better. It's what I was given in physio and refused to give back! I do find I get more 'help' when I have the crutch than without. I also get more pitiful looks which I don't like. But, probably the crutch makes people think of injury rather than disability, which in itself is a bit shit!

live that is one thing I found with tramadol is that once I was used to taking it, I would feel the withdrawal of it very quickly, but funnily, I felt flu like symptoms! I get that a lot

maizie you poor thing, your poor little un, hope the puking has stopped? A few people seem to have had a half term puke fest. Happy vibes for you all.

DD's wrist is fine. Sore if she bends or puts too much weight on it, or carries something heavy, but she seems to be having no major issues with it. I was just being a panicky drama llama DH's knee is ok too, well, not ok, he is still having trouble on it, but he can walk now, just can't do stairs well, or twist or carry anything while putting weight on it, but not like it was.

I got a lovely grey NHS granny stick but I ditched that and bought myself a purple one for social and a black one for work

a mum at DSs pre school has a fab black stick with big curly purple ribbon/material wrapped around it. I want one!

Hi all hope you are not too tired after your late nights. My dd has had a bad night and had a lie in too which was quite nice as I managed to finish my book, but hope she will get back into ok habits in time for school on Monday. She has to finish her project today so lets hope the extra sleep helps her work.

Pavlov so nice someone helped you in the cafe I think maybe a crutch makes your problem look more serious than a stick, but some people are just nice and have good manners and will always help if they can.

Losty glad you aren't lost. You are allowed an evening not using MN if you want but kindly let me know in advance. Only joking- who would be doing something else on a Friday night?

I think I would miss you guys too much now if I went out!

How old is your DD again live?

DD, DS and I are in bed. I have got up for a wee, that's it. Kids have been up, had bath, now snuggled with me. DH is like 'aren't you getting up today?' and DD said 'we are all in bed, we are having a Relaxing Day today' and then DS shouted to him 'daddy, you wanna join us Relaxing?!' so cute. However, the house is a mess, DH's knee is causing some pain, mainly as I keep getting him to run up and down the stairs. And I have invited a friend over with his little boy who has chicken pox! Our children have had it, and he is a lovely boy, I expected his parents could do with some sanity after being couped up, so, got to go and make the children's room safe as it's a bit of a minefield currently!

Those who have the handheld dyson - which one do you have? We have agreed we need one, and I said to DH he could get one if he made me another coffee in bed (hence his hurty knee) we are going to give it a couple of weeks to see if we can get it on offer though as it's Verr Expensive, and he would prefer the even more expensive one that has the 20 min charge (why would you want to hoover for 20 mins ) but if no luck by then we will just get it. Nice aren't I ?

The weather is nice, and I feel bad for not wanting to go out in it with the children. But, really, I just want to do Not Very Much.

Wow, you lot. Codeine and tramadol sure get the chat flowing! I've been a very early to bed girl lately which is rather dull. pavlov, you've perked up, hurrah! Glad you had that itching (!!!) moment in the cafe. I'm now realising 150mgs slow release may be a bit strong. I 'll ask for 100 and try that. I feel like I'm still affected the next day though not sure that could be true .

Thanks for the pro midwife vote, there are some shockers not so great ones but honestly tons of lovely people working under the most enormous stress. Proper life and death quite often. However, I'm happy to report I wasn't on the delivery suite which is the bit most people obviously remember. I did antenatal care and classes for a very vulnerable group. I will sound boastful but my clients used to often refuse to see their regular midwife or GP because they loved coming to see me so I ended up with stupidly big clinics. Possibly because I was nice to them. I loved my girls mostly. I really miss it! though not the endless! pointless changes and politics of the nhs.

My stick is a walking pole from an outdoorsy shop. It has a slight spring which is goo. I've got one with a rubber bit in the bottom for indoors and one pointy one for outdoors poking people who stare at me when using the disabled bay, they can fuck off.

maizie , I think! it's you???if taking codeine do add paracetamol! the codeine works much better. My anaesthetist told me that. It's true, I even had to take it with morphine. It means you need less codeine in the long run. Good luck with your op. I'm ashamed but not sure what it is? We really do need a brief resume with our names. Mine is there at the top but my memory is truly rubbish.

Yesterday I transferred all my stuff from my back bag to my brown bag the left the house with my empty black bag. Didn't even notice until I reached my destination.

Have a good day, everyone. Hope vomiting dc are better.

I'm feeling decidedly grumpy today

I keep looking at my lovely sofa and I can't sit on it because its too low -sob!