More Terrible Back Stories

[Matildathecat]

This is the support thread for all sufferers of back pain. Acute, chronic, agony or niggles, we are strictly non competitive. All newcomers very welcome. (Though be warned, the language can be a little 'ripe' ).

Here are our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues

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.

So come and join us for moans, advice, downright rants or just a laugh.

Reading through. Robaxin, so far, has seemed to work. I'm on 750 whatevers. Think that's quite standard. It's newer here than in the USA and is is not as well trusted (trialled fir less time, according to my GP). I suspect it's more expensive. I've only been on it for about 3/4 nights. Taking once at night. May be coincidental but I can't feel the tightness in my shoulder blades. Does nowt for nerve pain (above hip/ waist thing) though. Ami only lasts until about 6, too. I'm sleeping but wake up as if I've partied long n hard the night before. Typical hangover stuff: everyone seems to be shouting, lights too bright, etc. think that's the ami though. It's no friend of mine. Boom boom!

Hello, TaDaaah & - er - welcome to the thread! Love the name. Great that the robaxin seems to be working. I've stopped the ami too. Couldn't keep anything down but paracetamol earlier this week & I haven't started it again - not sure it was doing much except helping me sleep. Not that that's to be sniffed at.

Yup it's a toss up between sleep n a mega hangover. Hmmm

what time do you take it Tadaaah? I found if I feel woozy in the am, take it a bit earlier and find where your happy medium is. It can make you sleepy when you actually take it but i found that effect has gone off, i try to take mine at 10, then i seem to be ok in the am, but i dont usually go to bed until about 12/1
what is robaxin?
and hello of course!
a good night's sleep to you all, i hope xx

omg denial I am so sorry that you have been treated so fucking appallingly. I feel tearful for you after reading your post. [hugs] and huge gentle ones too. How fucking insensitive can people be? a) you should not be given information about diagnosis, issues such as inflammation and treatment by letter in the first place. This should be in person. Because what about all those questions you are inevitably going to have? Are you meant to just shut the fuck up? Not ask those questions? What goes through their minds when they dictate letters that give news which is going to leave someone feeling upset? Clearly not very much. And, the locum should not be making decisions about stopping meds that you have been told to take by your consultant, and change them without his input. We are not talking about changing from ibuprofen to naproxen here. And the fucking HCP telling you that addiction is not something 'people like you' need to worry about

And if there is inflammation, then they need to bloody well deal with it right? Surely they should not be waiting for it to get worse before addressing it? Can you talk to PALS? Do you know a lot about the drug you were hoping for, the expensive drug and how it will help? If you can go armed with evidence and information on how this is the best drug for you, with PALS support, maybe you can get it. Unfortunately, this constant fight is darning on it's own without pain and people making you feel like shit to wade through too.

I know it's early but have some and a cup of

there was a b) and c) in there too, but I ranted a bit so you gonna have to find them I feel so cross for you. How can they not care that much that they don't have the chat with you about those meds in person, to explain their reasoning. If you are cautious about them yourself, maybe a conversation would have left you with more understanding about their decision (but possibly not by the sound of it) and you could have a chance to explain when they will consider it, how they see this going for you, what the future plans are for treatment re this drug. It's all so fucking impersonal. I would never, ever leave big decisions and information to be passed to my clients via letter unless there was absolutely no choice i.e. they never turn up for their appointments. Right down to if I recall them or if I need to make safeguarding referrals. I always get them in to see me face to face and even if that means I need to organise a bit of childcare to squeeze them in before I go home. This is their life. It's not trivial. And nor is your health, which the HCP all know can lead to depression if not handled well by the 'patient' so that must also apply to how they behave. If we don't know what is going on with us, if we don't understand what is happening and why, we are going to be more likely to feel out of control and our mental wellbeing will deteriorate (and surely, from a financial and pressure on NHS point of view if not a humane one, that should be considered).

Sorry. Another rant

So cross for you.

Hello Maizie! [Big grin]
I'm naughty. I like My a Time on e I've finished working, made dinner and transported it to my take, iPad, phone zone, where u eat and watch/ look at several screens, resound to texts and sort diary. I watch crappy TV and don't go to sleep until about 10.30pm - often much later. If I take my meds., I'll have 5-10 mins until my own inbuilt computer shuts down, so I take it when I'm good n ready - toooooo late.
Hence waking up groggy. My fault, I know.
Robaxin is a muscle relaxant. Available in pharmacies in the USA. less commonly prescribed over here.

Oh denial. Fucking hell.
Shit. I know how it feels to be beaten down, confused and emotionally too weak to fight a system that has it's own agenda (funding n fobbing off). Hope your biscuit/s gave you the necessary energy to do it though. GP able to be autonomous here? I don't know those drugs but sounds like locus wasn't reading records or listening to a weird you were saying. PALS in my experience, have been crap. However, threatens to go to them might be somewhat effective in regards to consultant. I'd contact his private secretary (even if with him on NHS) and say you'd like a call from him. Take no prisoners. Say you've been given incorrect and harmful advice by his locus and are now suffering as a result. You have two choices, have an ointment with consultant or go to PALS.
Maybe. See what others on here think.

Talking of locums - the one yesterday didn't call me back so no muscle relaxants. Luckily, I have woken feeling better than I have for a while, I think due to the diazepam largely but also the chiro and hydro I think helped. I hope it lasts but feel myself seizing up already as I have put a load of washing on and been moving about.

I might talk to them about the robaxin, although I am fine on the diazepam so have no reason to change that, i use it rarely and when I do, at low doses and it does it's job well. The side effects, although quite strong, I am prepared for when I take them, and they don't last any longer than me taking them and a bit tearful the following day sometimes, but I never take them for longer than a couple of days at a time and only then when I am really bad. Could probably have done with two days of them this time though to really get my muscles relaxed again as although I know it's not the problem its certainly contributing significantly to the increased pain.

it definitely complicates the issue pavlov, i'm guessing you have to wait till monday now? hope the improvement lasts, don't do too much (sorry, I'm bossy, but just concerned for you and i know what i'm like when things improve- always do too much!)
I'm off to my parents' with the kids later. Dh will help me to waterloo, then just take a train and get met at other side.
I am knackered today , only got to sleep around 3, dd woke a few times in the night and ds woke me at about 6, convince him to read a book in bed till 8 but it wasnt full sleep as he made noise. Dh coudnt let me lie n and take over coz he was out seeing friends until 5.30am.
hope you are all going to get out in the sunshine today

Glad you slept a bit better P. If your Ds are working (diazepam?) wouldn't bother changing. Maybe
I found I was really didn't fur a couple of days after taking ami. Pour xiykdve been partly cos didn't want to b on anything.
By the way, these muscle relaxants - what happens when we stop taking them? Do our muscles tense up/ spasm again,

Maizie, not a good night then?! Hope you get a better sleep tonight! Sounds like DH had a good plan - party, drop DS at station, dispense of DCs abd dw, return home to sleeeeeep?

I am currently wearing these Bright Red Shoes and I am holding you all personally responsible . Who knew talking to people about having crap backs would make me more sylish!

denial, sorry to hear this what a totally useless system. GP sounds good, though. Just to say my experiences of Pain Clinics has been quite good. Long waiting lists, of course (did get speeded up with tears on the phone) but people who are knowledgable about severe chronicl pain and not so much looking for the cause but just the best ways of relieving it. I'm under two different clinics. At the local one I've done a Pain Management Course and had counselling. The other is in Central London and I get injections etc there. Really sorry but can't remember your diagnosis but anyway they might be better than you think.

Lying down after longer than wanted walk but I love going.

Still no word from ATOS. Could end up going to the grave whilst still on the waiting list for assessment.

Get you, losty, what next?

losty O.M.G I LOVE those! Are they comfy? I was going to ask what we are to do about the approaching nice weather shoe wise, as these lovely Fly Boots can't be worn All Year Round without sweaty feet and looking a bit daft on the beach with swimwear and/or summer dresses on…

I am feeling a little worse than I was earlier. But, just taken the children to a 3rd birthday party so to be expected. I am now officially Done.

you guys I've had a bit of time to process it all now andasmuchwineasimallowed Its psoriatic arthritis which is an inflammatory arthritis. I have the spinal version which is particularly pernickety to treat. The MRI was sold to me as," lets see if you have a normal injury in that bit of your lower back that's getting worse or if its inflammation that we can use anti tnfs on and zap". The letter was four sentences that said yes its inflammation but failed to explain that it was not enough inflammation! Also failed to propose any plan whatsover. I can cope with almost anything if I have a plan.

Anti tnfs (biologics) are minimum 5k per year up to 12k plus ancillary monitoring and increased side effect costs. They significantly increase your risk of contracting a serious infection and may or may not increase the risk of some cancers. But big but some people can lead a normal life on them for many years. We have a lot of cancer in the family though.

The last phonecall on Friday was from my actual consultant not the locum. He in that phonecall was the first one to spell out that " we have nothing else to offer you". He was quite dismissive of the pain team before and he and his team repeatedly told me that their aim for me was normality. That's the killer, they have taken away the hope. He's going to speak to his locum during the week to clarify the other guys insistence that my current celebrex dose was " excessive" and encouraged me to retry the indomethacin that I had a reaction to during the week. I'm really not sure about that.

I'm actually fairly positive about seeing the pain team I can see that it can be really helpful for a lot of people. I just know it means rheumatology have given up on me and I need to adjust to this. I will be asking for injection in sacroiliac joint (my main problem area), help with pain relief for my active part of the day when I don't want to take codeine. Maybe try to identify if some of the pain is nerve pain and whether the amigabas are part of my future. You known what I think I could also do with some counselling and an anti depressant.

I'm also about to dose up on codeine and do run 2 week one of couch to five k because why the fuck not, its going to hurt like hell anyway I may as well get out there. I've swum 6k in the last month. Apparently I can't do much to make it worse.............Its also really important to stay as fit as possible to support inflamed joints etc. I'm literally encouraged to take lots of drugs and run around.

I'm also going to get copies of all my records from all of the hospitals that have treated me over the years and become an annoying patient with a folder and a highlighted list of nice guidance etc.

The one bright shining light in this week was the new GP in our local practice. She has never met me but reassured me that I wasn't being unreasonable to be upset by all this and bugged and bugged consultant until he rang her back (he actually got me ha ha he got the number wrong and ended up with no choice but to speak direct to me ha ha ha). Also my DP total star he must be so sick of all this and no end in sight..........

Last me me for a while I promise..........

oh lost I need those shoes! tadah have we met before?? Pavlov its you who has inspired me to all this activity and matilda have I mentioned how inspiring your experience and this thread have been?

denial oh no! that means it will be my fault if you do too much don't do too much please?! Or else I might have to be forced to do the couch to 5k too

tadaaa is Frozen/Goodness in disguise after being allowed back on MN after upsetting some education thread posters that's right yeah tadaaa?

Love the shoes. Wouldn't fit my orthotics. Though.

no fear pavlov, i was out for just under an hour, I only walked slightly faster / could be called a jogged for about 8 minutes of that. Its taken me two years to build up to that. Its a new form of exercise programme for tortoises :) But hey it makes me happy and gives me a chance to listen to my music full blast and clear my head. oh and buy expensive trainers, they're like walking on air. I can already feel my ankles swelling..............

I had figured out tadaah by the way

You demon secret agent buster! Jogging for 8 mins in expensive trainers counts as pro. level in my book!
What make are they? Might buy myself some. Currently wearing pretty flats (flip flops or posh ballets). Not great for my back.
Like the group icon Piccies? It's just made for you- although was selected with irony ... and hope. Nothing like being in the swing (preferably just having finished if I'm honest) aerobic exercise to music. Now I'm on the Pilates scrap heap. Doomed to a life of the difficult and boring!

Brooks, might need another pair for every day that don't get dirty. because they are so bloody comfy.braved the running shop and the gait analysis machine thing add well. felt like a total fraud