Back Again! Back Pain Support Thread

[PavlovtheCat]

Only right I start the new one seeing as I was responsible for the last one ending so abruptly !

This is a support thread for people with back pain (that does not even cover the description of hell that back pain causes). It's for all types of back pain, for long term posters with chronic pain (including those on the upwards journey to recover), short term advice through tough acute episodes and all the in betweens.

We moan, winge, share successes, guide each other and hand hold through the maize of a million medical routes and options, treatments, investigations. We internet shop as a form of pain relief, drink wine, take strong painkillers, eat cake and we go through lots of heat packs!

We don't always have the answers but we do have a lot to say about it all

Here are the links to our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues
www.mumsnet.com/Talk/general_health/2023274-More-Terrible-Back-Stories

sounds great mummy, long may the improvement continue I can imagine the fear of relapse, hopefully it will fade over time!

Mamicar, sorry to make you relevant what you've probably already explained but what're the meds. for? Nerve pain?

Haven't manage to read everyone's posts. Non stop day and there's loooooads fir me it catch up on. Just popping on to say hello and post my back-porn: www.betterware.co.uk/ache-pain-relief-upper-body-therapeutic-wrap.html#tabs

Things certainly get racy nowadays!

mami the ami will take a while to start working and that will address the nerve pain in buttocks/thighs/legs only. Napraxen should start to show some benefits straight away but does build up in the system and the co-codemol should be working pretty much within a couple of hours. If the pain is so bad on those meds you are crying, call the doctor to see if you could get 2 days or so of diazepam as it sounds like there are muscles spasms. Don't want to appear to constantly advocate medicine taking, especially as there are strong meds, but when you are in an acute phase, you need to get the inflammation down and the muscles to stop spasming before you can start moving about ok, which is where you want to be - mobile but gently moving and managing the residual chronic pain (that sounds like milder, but I know that chronic pain can be and often is as horrible as acute, but different to manage).

losty what an absolute prick of an audiologist! as you said, so uncalled for, it's hard enough to have to be in a vulnerable position with relying on someone to help you hear without fucking attitude. What is it with these people. And matilda ATOS?! WTF, surely the fact your MP has been involved is suggesting they are taking Far Too Bloody Long?! Why can't they just make an interim decision based on their current information, as this is your life in their hands, this is your income you are waiting for.

Didn't we have a list of some kind running on one of the old threads, for those who should be given an opportunity forced to try one the Pain Transfer Device or whatever we shall call it, when the design is ready? I have some more to add:
Partners
Surgeons
ATOS
GPs and other HCP
Let's add Audiologists as a separate group
Friends (so-called or For Real, although, the For Real ones probably don't need it)People who see you walking slowly with your crutch to a checkout line in the supermarket with 4 items, then rush passed you with their full trolley to get there first. And any other impatient rude tossers racing to get ahead in queues.
Employers/Colleagues

I was vaguely thinking about writing to my surgeon and telling him how he behaved affects people, and did he meant to be so rude?

Talking of we had cake for breakfast this morning - muffins to be precise, with extra chocolate toffee syrup on top

mummy meant to add of course you are welcome! and, good to hear a positive story for people who are here, or who come on and might be in a position of having surgery. We have all had various experiences of surgery, positive, negative and some partial successes. I hope it continues and keep at the physio as that is so so key to recovery (and don't overdo things no matter how well and physically fit you feel you are getting).

Morning all. Welcome to all newcomers.

pavlov, keep that list safe. Forgot to say ATOS woman said that I should have been updated every four weeks and had that happened? Hollow laughter. As if. They are beyond fucking useless. So my precious appointment with Dr Pain today will be spent trying to get him to write a report rather than discussing and performing injections. To be fair he knows virtually nothing about me. Oh Fucking Hell.

Must get up and fave the Scales of Doom at weight watchers. I'm right jolly this morning...

mami, do get onto the surgeon today. That level of pain is unacceptable. Friend's DH had surgery yesterday after about four days post MRI result. It can be done when necessary.

And sorry forget who's DH can't get an MRI because 'there's no point'. Go back today and demand one. Here is the phrase: back pain is not a diagnosis and we wish to have a diagnosis' tough's experience is why it is so crucial. I mean it demand an MRI.

Morning all. I spoke to on call doc last night who told me to take another amit - it worked, I slept all night so although feeling a little groggy today I am feeling much better. I have 3 yr old home today we are just about to have a nice bath together :)

Will come back later when bath isnt running :)

Oooh look at that neck and shoulder wheat bag. That's nearly as exciting as a pair of bright red shoes that is!

Pavlov maybe save the 'did you mean to be so rude' for when you have 100% decided that he can't be any use to you

I had a bath for the first time in ages last night, I should do that more often felt marvellous once I'd got out. DS2 had picked out a bright gold bath bomb in Lush and even though he only had 1/4 of it in the bath the water was so sparkly and soft feeling I topped it up with hot and had a nice soak after him. I also introduced him to the pleasure of reading in the bath and how to put the book on the radiator afterwards if you dropped it in.

ATOS are just a pile of stupid idiots topped by some bastard cronies of the government lining their pockets, it makes me so so so so so SO cross. Hope you manage to get some useful time out of your appointment as well as the letter the cunts idiots need.

One thing I like about those health care aid catalogues is they normally feature a youngish nice looking model, so you don't feel so ancient buying the things.
mamicar so glad you got sorted out last night. Keep pestering the g.p if you still need more pain relief.

Thanks for the welcomes. Would love to hear the wisdom of those who have had surgery for a herniated disc and also happy to share my experiences with anyone considering similar.

I hurt. That is all.

Sleep well everyone.

So this morning I've been instructed to call the ATOS person to be given a fax number for the report upon which my pension decision rests. I call the number which I saved on my phone yesterday. It is dead. I try again. And again. I cry a bit.

Later I'm actually called by another of the lovely ATOS team. If Dr Pain won't write report my application will be deferred. Indefinitely. He has to write the report and say there is no scope for any improvement before I am 60 Or Else.

I get to the Pain Centre. It's properly heaving. I finally get through to the ward and can hear Dr Pain consenting various patients to their procedures. If anyone asks a question he replies 'don't you want me to do this today?' This happens to each patient all of whom have waited months for this.

Anyway, my turn. I say I need to speak about this. He looks very harassed and says no way can we discuss it now. I offer to come to a private appointment but no, he doesn't want me to pay. I'd like to pay. No, come to clinic in June and we can discuss it then. End of discussion.

Finally through to injections. Three Medial Branch Blocks. Fucking hurt. No idea if they are working but very sore now.

What a lovely day.

Can see no end to all this.

Matilda, that's so shit. How can someone just refuse to write a report that you need so badly? Was he just working on autopilot? Sounds nightmarish.

When I was teaching we regularly used to get urgent reference requests from former students; & while there was a certain amount of muttering about lack of notice, we just used to write the bloody things, in our own time. Because that was the decent thing to do. What's wrong with these people?

Hope your injections start to kick in & the soreness wears off at least. Sorry you're having this struggle on top of everything else.

I'm feeling incredibly thankful that my pain levels are so low right now. Just hoping this can last into the boys' school holidays so I can do some fun things with them.

Oh Matilda
Fucking hell

I think atos et al are requesting so many reports / rereports / additional reports that the system is collapsing. I'm not excusing pain guys attitude at all whatsoever but I think the average gp surgery / hospital clinic etc are drowning under all the paperwork and do not have the admin systems to cope.

Matilda you have to go to his and atos manager /pals /formal complaint route, you have no choice it's too important. could you suggest they just repackage whatever last guy wrote with new name??? or can you go elsewhere for a private report? didn't you say you were also under another pain clinic??

are they deferring decision to avoid you going to appeal because they are losing so many? is this a new tactic??

I wonder would a solicitors letter work here??

matilda

denial I do understand what you are saying though. The government I think is aware, but doesn't care, that this is putting a huge strain on resources. I think the government care slightly more that using these agencies to do work like this with no ability for their own judgement is costing them significantly more than they will be saving by 'weeding out' those not fully 'entitled' to the money being claimed (with their ridiculous over stringent tests in place). If in Matilda's case they had an independent doctor look at her medical notes, in that instance, that is all it would take to see that she is not in a position to work now, or in the future, all the information they need, it all there! 1-2 hours of medical doctor's time would be so much cheaper than what they are doing now. They care slightly more as I said, about the cost, but not enough to backtrack and lose face and say 'this absolute farce of a system of privatising decision making about people's lives does not work'. It reminds me of my DH driving toward Wales having refuse to turn around after taking a wrong turn and insisting I find another way to get where we want to go, in the dark, lashing rain and with a crying baby, without turning around. Except on an obviously much grander scale!

Matilda that is so crap and disappointing, I feel for the doctor though as well because he has probably been set an inappropriate target and I doubt he went into medicine to treat people in such a production line fashion. The world has gone mad, I miss the NHS from when I was younger, we had the time to to good for people not be treated poorly by managers with no comprehension of front line medicine. It's crap for everyone.

I am SO overexcited, I have a wonderful friend and her family coming to stay for three nights, the sort of good friend who won't judge if the place isn't pristine and will help out too. I've still done far too much in my excitement though, had to force myself to sit down because I am sore as hell already. I have noticed the last few weeks though that my morning stiffness is a lot less, 9 months of persevering with these horrible bright orange tablets is starting to pay off .

Matilda now lie still and get through the extra sore from having the injections and let them do their work, in about 5 days you will really feel the difference so ignore crap disappointments for now and focus on pain relief, you might as well get something out of the day.

Girls, bless you all. Your support means a huge amount because you all, unfortunately, 'get it'. I'm going to wait for the June appointment because to be fair DrPain did want to assess how successful these injections had been ie so he might ba able to say he has tried x,y and z for the report. If he won't do it then I will insist on seeing him privately. We all know how heavingly busy these clinics are.

Today ATOS have clearly been busy kicked hard up the arse by mp's letter as I have received dates for both ESA and pip claims. Both in the same week. What an extraordinary coincidence!

Tbh I'm just feeing utterly fatalistic about all of it. My husband can support me but it's just so unfair to struggle so hard. Anyhow will attend and see how it goes. I must admit yesterday leaving the hospital I felt uncommonly low. Glad I'm not suffering depression it must be so horrid.

there ends the self pity fest!

Wishing all of you a lovely day. losty enjoy your visitors.

Steady now everyone.

matilda just because your DH can support you, that does not mean he should have to, when you are entitled to financial support in your own right. You are person in your own right who up until this heap of crap had your own income. Imagine how fucking utterly shit this would be if you didn't have DH to support you both. And they don't know that you have some financial backup to stop you losing your home and everything you have.

In particular your pension because before this, you had a job that you pain a pension contribution in, and they fired you because they deemed you as unable to work, therefore they should bloody pull their finger out to make that right for you. Cross

losty hope you are enjoying your time with your friends and didn't do too much before they came.

Hope everyone else is doing ok today.

I am wiped! DD and I went Actual Real Shopping today. Not Internet Shopping. I bought a dress, a slouchy oversized jumper and sheer top with cami for me, a fab dress from M&S for DD and some other clothes for her and DS. Went for lunch in JL which was lovely - they looked after me properly in there as I was not walking so good by then! The restaurant is high up and one of the staff took DD off to find somewhere to sit, and carried our tray, while I paid and found her the best spot, cleaned it for us as someone had literally just left, and stayed with DD while I finished paying and hobbled over, got us our cutlery etc. They are always so friendly there, genuinely so. And the food was lovely. By the time I got to the car I was in agony though. Went over to a friend's for dinner, and called DH who we were picking up on route to get me some strong painkillers! Luckily, a good friend who knows me well and happy for me to lay almost flat! She has a bad back herself intermittently and was having a bad day so we struggled together. She is my name sake so we had a chuckle about it!

Lovely day, but am paying for it now.

Maybe, as well as a list of those who should get our Pain Transfer Device we should have a list of those who help. I shall start:
Johnnie Lou (see, I get the lingo now!) - for having lovely staff in their cafe
Fly London - for having comfy boots that mean we can look a bit stylish!
My HR Manager - for not firing me yet
Frank Turner!!! - for providing me with some awesome tunes to cheer me up, for being pleasing on the eye and for having a bad back and without knowing it, being part of our 'gang'
DH - for always being awesome, pleasing on the eye (but he wants you all to know he is not jealous of frank turner at all and he has not asked me to write this about him )

Lurking but would like to ask how you get any sleep.
I can sort of cope in the day but am becoming so ratty as not much sleep due to the pain.

Hi, just posting quickly- you guys wrote a lot in the last few days it took a while to read and catch up. I went to a synaesthesia conference yesterday- and a bit today in a minute. It was fantastic and very interesting.
another psychology student? mamcar well come all newbies or returners.
Have started the gabapentin, making me slightly sleepier in the am but nowhere like the side effects starting Ami. first day just took one before bed and i goe strange sensations lying in bed trying to sleep feeling like i was vibrating along me whole body. (??) anyway didnt get it yesterday but it did make me start to hallucinate a tiny bit- anyone else had that experience?
sorry to hear some bods had bad pain yesterday, hope you feeling better today. they really are letting you down and making you suffer nedlessly matilda, hope you can resolve this and get the compensation/pension you deserve.
dripty what are you on for your pain? sure some on hear would recommend Amitriptyline or gabapentin if there is any nerve pain going on and diazapam helps in low doses to undo muscle spasms at night - have ou got a good gp?
hope you all have a great day, hope it has more sunshine too

dripty hi, drugs is the short answer. Might be able to offer more if you give us a bit more info. It's often nerve pain that does it's vile work at night ans as said above amytriptiline is good for this in two ways. 1. It makes you sleepy. 2. It dampens the over active nerve.

Waves from bed drinking tea. Considering earlyish swim in the sun.

Or lazing here with the paper

Barging in as usual - reeeeally tired n not been on for ages so I'm sorry I've not caught up with you all. Dripty, I'm a pro at not sleeping because of pain and I too can cope during the day but tiredness (2-3 years of being awake from 3 or 4am onwards) was getting on top of me. I now take amitriptaline 10mg and Robaxin 750. But this hasn't always been my concoction of choice. Depends on what the pain is. Do you know what yours is? Apologies if you've already said.

Just read through everyone's comments since last I posted. Can't ever seem to remember name (or FB face) of who posted what but laughed at Johnny Lou / Hall of Thanks, grinned at helpful friends coming to stay, saddened to hear of useless pain consultant. How are you post injections, now? Thank gd those thongs finally came through!!!! Well done fir pursuing things.
I'm wiped out, too. Had best ever day in London yesterday. Took children to see a children's ballet, dinner, a short ride (5 mins for £10!!!) on a bike carriage thingy) and a snog (ice cream yogurt). Loved it all! Paying now. Lol
DH hasn't had a break since they first found the tumour. He still dies mornings at weekends with DCs. Felt bad today n made discuss lunch. Now laying down. When will I be up to speed?
I'm surrounded by clusters of clutter. Clutter clusters.