The Back Pain Emporium is Open For Business. Browsers Welcome. Thread 7

[MatildaTheCat]

For anyone experiencing back pain it can be a terrifying time. What is wrong? Who can help? How long will this last? We,on this thread are here to support you;offer empathy and help to navigate the almost impossible task of getting a diagnosis and the right treatment.We are not doctors but people who have trodden this path slowly and painfully. We also chat a LOT and welcome all newcomers. It is strictly non competetive regarding pain and no niggle is too minor.

Those who have long term back problems know that the best way to help manage back pain is to internet shop for shoes, bags, and back support devices. Those who are new to back pain, these are important lessons to learn. And here within this thread is where you will learn those lessons.

You will also find other helpful advice on pain management, different treatment options from hydrotherapy and physio to surgery, experiences of others navigating the big and scary medical world, both private and NHS (and abroad from the UK) too, as well as issues around work, being a parent while managing pain and disability, and the impact on the relationships around us. Not to mention the pain of dealing with claiming disablity benefits. .

Between us all, we have a huge wealth of knowledge and experience, and more than the practical advice, the jargon and information, we know what back pain is like, how much is affects everything around us, and sometimes, all we need is to have people listen who Get It.

We talk painkillers regularly,sometimes drink , have hot water bottles and wheat bags galore, and hold hands a lot. It's potentially all very Unmumsnetty as we do actually show some lovin' from time to time, although we Never Ever call each other hun.

If you have advice, need advice, need a hand to hold, want to do some shopping, then come in. We are friendly. We talk a lot. Come in, have a and say hello

Previous thread for anyone interested

I've totally overdone it today and am lying down for the first time since I got up which is unheard of.mi just scheduled too much. Never mind,mits been very productive.

Schmeegle, don't forget good old paracetamol. Because it is so available and common it is underestimated as a really effective painkiller with hardly any minus points if taken correctly. Glad you are resting. It's amazingly tiring having visitors and I bet they went off thinking you'd done nothing at all and aren't they kind to have visited you and cheered you up . Never mind, we understand. Hope your shopping is going well.

Has anyone heard of Schmori's nodes?

I got the results of my MRI and as well as a bulge and nerve displacement (left) at L5-S1 which was noted in 2009, I now have a large Schmori's node superior to L2.

Good idea Mat. Forgot about plain old paracetamol. How you're in a position to have a good rest this evening.

Sorry YNK, never heard of those nodes before.

I know it's a vertical herniation that 'fractures' the adjacent vertebrae.

I also know mine hurts - a LOT.

Oh that sounds awful YNK!

Schmorls' nodes are alleged to, in themselves I believe, not meant to be significant in terms of pain (not my own knowledge, just what I have read) but that the presence of them indicates that other stuff is going on, i.e. DDD type stuff. I will see if I can find the info I read about them, as I have several in several vertebrae. They are, I think, disc herniations into the vertebrae rather than outwards. I personally believe they (hcp/researchers etc) don't really know as much about what actually does cause pain as they claim, as minor disc bulges can be immensely painful and larger ones can cause not too much pain. It all depends on what else is going on in there and how our own bodies respond to pain.

Matilda and schmeegle stay in bed til really bloody late tomorrow, ok?!

I really don't think anyone i know gets how much effort having guests is when in chronic pain, when every movement really fucking hurts. Except, my nurse friend. She gets it all completely and utterly and gets stuck in when she is here, even when I want to fuss over her. She is one of those people who doesn't sit and watch you cook or clean up after dinner, sick or not, she knows my kitchen (old and now new!) and will just start prepping dinner. tbh, she is like family, and acts as such. I think it stems from us living together, me/DH and her/her DH and their toddler, for a year, we just work together well, and I don't mind her 'interfering' as it doesn't feel that way. Any-one else, including actual family, and as much as they try, it really does add to the pain levels after a while

I have also done too much. I am not even going to talk in detail about my pain and recovery. It's not going as well as I wanted and I am trying to pretend it's really successful and worth the 6 inch scar as I really, really want it to have worked as well as 50%

Back to work on Monday. Apprehensive as tiredness levels in particular are absolutely walloping me. I have been trying to get up this week (mostly successfully) at 7:30am, in prep for work hours, normally at 7am or so. And, all I can manage to do is sit and struggle for that total zombie feeling to go away, while chucking back coffee and fighting the urge to not crawl back into bed. I don't know if anyone else gets 'sleepy tears', but I do, and in the mornings, the tears are just literally streaming down my face. By 4pm, same. 7pm is my barrier, and that's when the tears start again, yawning, physically exhausted not mentioning my back and leg pain and spasms by the evening this is without doing huge amounts and going to bed quite very early.

But, I need my routine back, so it will be good to get back to normality, although I think I am going to be knackered for a bit. GP before work on Monday ton get a 'fit note' as boss wants the GP to sign off that I need a phased return really? isn't it fucking obvious? But, if they want me in 2 hours later than I planned, and for my GP to sign me as fit for phased return for longer than they will want, I'll do that. Let's hope the GP agrees I am ready, as she will encourage me to stay off if she catches a whiff of not-readiness.

I have lost weight. It's not a good thing. I have lost just over 1 stone. Not sure when i lost it, but think it's been since surgery (as it was christmas, and while I didn't eat my bodyweight in chocolate this year, I did eat a lot more than normal). DH thinks it's since surgery. And a school mum noticed today too . My eating is sporadic, and I get so tired at night I am too tired to eat. I am trying to eat my main dinner at lunch time so if I miss evening meal I am not missing huge amounts, or at least just have a sandwich, but I have gone right off bread, which I used to eat a lot of, and not doing the snacking I used to do, I just don't feel hungry. Sometimes, when I do eat, I feel a little bit nauseous. I am hoping that's also linked to not working and lack of routine, as I don't want to lose more weight (gone from 9st 2 to 8st).

Matilda and schmeegle stay in bed til really bloody late tomorrow, ok?!

I really don't think anyone i know gets how much effort having guests is when in chronic pain, when every movement really fucking hurts. Except, my nurse friend. She gets it all completely and utterly and gets stuck in when she is here, even when I want to fuss over her. She is one of those people who doesn't sit and watch you cook or clean up after dinner, sick or not, she knows my kitchen (old and now new!) and will just start prepping dinner. tbh, she is like family, and acts as such. I think it stems from us living together, me/DH and her/her DH and their toddler, for a year, we just work together well, and I don't mind her 'interfering' as it doesn't feel that way. Any-one else, including actual family, and as much as they try, it really does add to the pain levels after a while

I have also done too much. I am not even going to talk in detail about my pain and recovery. It's not going as well as I wanted and I am trying to pretend it's really successful and worth the 6 inch scar as I really, really want it to have worked as well as 50%

Back to work on Monday. Apprehensive as tiredness levels in particular are absolutely walloping me. I have been trying to get up this week (mostly successfully) at 7:30am, in prep for work hours, normally at 7am or so. And, all I can manage to do is sit and struggle for that total zombie feeling to go away, while chucking back coffee and fighting the urge to not crawl back into bed. I don't know if anyone else gets 'sleepy tears', but I do, and in the mornings, the tears are just literally streaming down my face. By 4pm, same. 7pm is my barrier, and that's when the tears start again, yawning, physically exhausted not mentioning my back and leg pain and spasms by the evening this is without doing huge amounts and going to bed quite very early.

But, I need my routine back, so it will be good to get back to normality, although I think I am going to be knackered for a bit. GP before work on Monday ton get a 'fit note' as boss wants the GP to sign off that I need a phased return really? isn't it fucking obvious? But, if they want me in 2 hours later than I planned, and for my GP to sign me as fit for phased return for longer than they will want, I'll do that. Let's hope the GP agrees I am ready, as she will encourage me to stay off if she catches a whiff of not-readiness.

I have lost weight. It's not a good thing. I have lost just over 1 stone. Not sure when i lost it, but think it's been since surgery (as it was christmas, and while I didn't eat my bodyweight in chocolate this year, I did eat a lot more than normal). DH thinks it's since surgery. And a school mum noticed today too . My eating is sporadic, and I get so tired at night I am too tired to eat. I am trying to eat my main dinner at lunch time so if I miss evening meal I am not missing huge amounts, or at least just have a sandwich, but I have gone right off bread, which I used to eat a lot of, and not doing the snacking I used to do, I just don't feel hungry. Sometimes, when I do eat, I feel a little bit nauseous. I am hoping that's also linked to not working and lack of routine, as I don't want to lose more weight (gone from 9st 2 to 8st).

wow, needed to post that so much it posted twice

Bloody hell Pav, you absolutely must mention this weight loss to your GP on Monday, ok? And get your HB taken. I bet you are anaemic. I won't say that you don't actually sound fit for work because I guess you know that. I so admire your drive and determination but please, be sensible. If it means doing three hours at work for the next six weeks, who cares? Nobody except you and secretly surely you agree you need more time. For one thing you have also been properly ill with flu.

Have got a bloody annoying cleaning bug. Because we've had some work done and some things look gorgeous and new, other stuff looks,er, not shiny and new and therefore needs to be scrubbed and made shiny. This is not back friendly. This is stupid. Please stop me.

Not looking forward to tomorrow. I definitely need a low activity day but have a dog walk scheduled in the early morning and am going out in the evening with an old friend. I suggested her local comfy pub. She has booked another one with hard wooden seats....I've messaged and said no can do. Oh dear.

Nighty night.

Oh Pav, sleepy tears are desperate - you sound thoroughly exhausted. That's an awful lot of weight to lose inadvertently. Your appetite sounds like it's on the floor. Definitely bring it up with the GP. It's a scary place - having surgery to fix pain and hoping you've made the right decisions along your journey and that ultimately, all your suffering will pay a dividend. I hope over the next three days you don't have anything too taxing to do and you wake up as bright eyed and bushy tailed as possible Monday morning.

Mat I hear you on the cleaning front. My parents and husband are doing everything for me since Christmas. Washing, cleaning, cooking, shopping, school runs, child minding etc. I can't believe how much they've given over to help. They spoil me no end. However, I'd give anything right now to be able look after my own children properly, to clean and arrange my home my own particular way. It's really starting to piss me off. I feel quite redundant at the minute.

Hi Pav, you do sound aneamic, I was like that (low appetite etc) and found my ferritin borderline. Gave me iron tabs due to all the restless leg symptoms I have.

Hear you on chronic pain. I keep getting lectures about the psychological side of it, ie if you avoid stuff etcetc but it's not that clear cut.

In my case I've lost lots of muscle, and it's atrophied. Then I keep straining it at the slightest thing. Im feeling like the iron is helping this or maybe the thyroxine. Or simply being off sertraline which I'm sure fucked up my muscles. I'm not so sure I've got hypermobility syndrome if I had the muscles.

I wonder if weight loss in you is partly muscle loss too due to inactivity?

Step away from the cleaning Matilda! Its just cos the sun is out and everything looks dusty but no-one cares

Oh Pavlov you are so determined you break my heart but not sounding really ready for work are you? I would hope your GP will see this or at least make the phased return longer (and start later). Stress? Depression? Anaemia? All possible and would explain weight loss though not wanting to eat is sooo alien to me. Dr Ally would recommend a huge vitamin shot in the bum (had one once and it was great!) Or just more recovery time.

Thanks all. I had a rotten night's sleep, hot all night, DS came into bed halfway through and DH snored. But actually, when I sleep well I can sleep through those things. Another morning of desperate tiredness and have gone back to bed for a bit with coffee after the children went to school (want them to see 'normal' mummy). I have decided I won't wait til monday to see GP as the tiredness is not good, and if it's something like anaemia I can get tested asap for it. I would not be surprised as I am not a red meat eater, although have always had good iron levels. Surprisingly, even through my pregnancy with DC, DS in particular when I suffered from HG and ate hardly anything I was still ok iron-wise, I started at just over 13.5 and went down to 10.5 by the end of my pregnancy with DS.

Interesting that iron deficiency can cause loss of appetite, and then it's a vicious circle isn't it? I don't really feel like my appetite has changed a lot, and I guess that's because I am not avoiding eating specifically, rather that I am not always hungry. DH has noticed though, probably because he eats alone some nights! I sometimes eat with the children, as by the time they are in bed, I am ready for bed myself and don't fancy eating. I know my appetite is low as I can only eat one enchilada, I used to be able to eat 2-3 .

I do wonder too if some of the weight loss is due to almost complete inactivity and muscle loss too ciarella although I was not hugely active before surgery, I was more than now. That does make sense.

matilda my place is always grubby feeling, especially now I have a clean kitchen and it drives me mad. Our bathroom in particular is in desperate need of repair. Next project. Currently we are fixing a few snags in the kitchen, little bit of painting needed, I really enjoy decorating, and it's such a shame I can't do as much as i would like, but I am doing a little bit.

Oh, meant to say earlier upthread that I bought some bargains from Wallis. I went in instead of online, and bought 3 pairs of trousers and a jumper for £65. The jumper is lovely actually, dark blue wooly and really my style, surprisingly. The trousers are brilliant - one pair for court work to go with my other bargain jacket from Debenhams (almost £100 worth for £35 in total) and my Fly London shoes, one pair of Jacquard style chino type trousers, and a pair of almost wet look trousers, Dh not sure I should wear them for work though as they are very 'flattering' and make my legs look longer ignore that they are a tiny bit loose even at 8 petite I wasn't successful with blouses/shirts, and the only ones I like in M&S were not in my size. I will pop into H&M on monday after work and take a look at some of their simple shirts. I want smart, but fun.

Went to see Gp today. My boss ain't gonna be happy he firstly thinks I am possibly not quite ready, that I need to slow things right down, and would prefer me to have another two weeks off. He also knows I want to get back to work, and so said he will support it, but I have to return slowly. He said 5 hours is probably quite reasonable amount to work, he thinks it would be better to do less days, rather than less hours, so do the 5 hours, will get very tired, then have a day off to recover, and build it up. He has recommended two days for two weeks, then add a day every two weeks til full hours, so 6 weeks to full time. And, he said this is not set in stone. I said 'yes, I can speed it up if I am ready' and he said 'I was thinking more of slowing it down' I am not sure the boss will go for this, normally sick leave phased return is a couple of weeks, and can be extended a little for disability related phased return, but GP wanted this after last surgery and they said it would have to be unpaid. it was a different big boss and that boss made me take recovery leave as sick leave, so might be different this time. Worse case is that I use my leave that's being carried across to next year to extend the phased return as planned by the GP. Or, I could say, the Fit Note states that this is the circumstance that I am fit to return to work so if not accommodating, I am not fit for a return to work. If I feel like being argumentative rather than helpful for example if I am still narked about not getting a get well card or messages I'll see how it goes on Monday and play it by ear.

Regarding tiredness. he thinks I am not anaemic as my colour is ok and my eyes look healthy coloured etc. he thinks I am a) expecting too much too soon as it's only been two months and that's hardly any time for my body to recover b) I have been double hit by surgery and the CSF leak, both of which will take their toll and the CSF leak in particular can result in additional tiredness c) my body is still damaged from surgery, my muscle are working harder to protect the area of surgery from further damage, and this means that any activity is going to tire me out as all my back muscles are working overtime d) I am very likely doing too much, which he didn't really expect any different, and even though I am going slowly, it's gonna hurt and I have to go even slower.

He said that yes, the diagnosis from the consultant does indicate arthritis and will mean likely continued back pain, but shouldn't be causing leg pain. He was at my leg pain and said 'lets hope it's not the disc' agreed it could be inflammation of the nerve as it gets worse through the day, and also that the pain from bone being removed will take a while to subside.

All in all, he thinks I am rushing with both activity and with expectations and to give it some time, accept I am going to be wiped out by the evening for a little while.

This doctor who had an accident and broke his hip/leg, has just returned from over 3 months off work and we were comparing recovery joked about him now being in the NHS as a patient as his review appt has been rescheduled/delayed but, now heard the other doctor, the female who I is also very supportive is leaving at the end of march

Good to hear you are being sensible Pavlov - my phased return was half paid and half sick pay if that helps? 2 months is not long enough - 3 months is more the norm (I made it with 1 day to spare!). You are going to be knackered after 5 hours trust me! The day off inbetween sounds great. I also didn't go in till 10 or 11 most days as yes getting ready just takes longer now.

Good luck!

That sounds sensible Pavlov. If you feel boss is not supportive you could contact oc health?

Tbh I'd be thinking about an even shorter day the first week. I agree you will be knackered.Glad your GP is so good and sensible and alive.

Not had a good day and due out this evening. Do want to go but dreading it. Friend offered to come to me for a take away but she the sort who might never go home so a bit wary of that plan . What should I do???

Oh it's so hard that stuff. I fear going away, going out.a friend dragged me to the six music festival - of course I wanted to go, was sick with fear, and spend the next 72 hours recovering. No alcohol and sat for most of it!

In not sure, I'd try to be assertive, do the take away and insist on going to bed when you need to.

ally oh that's worth mentioning, about the sick pay for half of it. My old line manager was fab when the big boss refused to give me a phased return. She said 'ok, lets not do it then. You come in, work half your hours, and if you can't work any more, go home sick. As long as you work half your hours, it doesn't count. So, I am fully expecting you to not be able to work more than half your hours for a few weeks But, if they can do it 'officially' I would be happier. I'll do what I need to do to get back to work properly, but at the right pace that I stay at work.

Do you mean you had 3 months off work? or recovery? I was under the impression from Dr Google I should be up and back to work at 5 weeks max, hence feeling a bit miffed that I am not running 3k and then doing housework every day by now

I'll definitely use my flexi time to start later, at least to start with, as I am really struggling in the mornings. Partly due to being stiff and sore, and needing meds to kick in, and partly due to physical exhaustion. I managed my doc appt today as it was at 10:45am! I can do 10am-3pm and still get the children from school on time (well, maybe duck out at 2:55).

matilda personally, I would go out. As, then I can leave whenever I feel ready. Nothing worse than a friend overstaying their welcome which for me is about 9pm these days and either being asked to leave so you can go to bed, or you staying up feeling ultra uncomfortable and exhausted and in pain as you don't want to offend. Unless you say in advance 'yes, coming over will be lovely, but I am probably going to be ready to crash at xxPM, is that alright? Or we can re-arrange?' then when it gets to that time, you can go 'well, lovely to see you!' (but you have to be super-bold to do that, not sure I can do that well unless I am very drunk, then I can, when it gets to midnight). And, once you out you might enjoy the evening change of scenery for a couple of hours. Not sure about you though, I am not so good driving after around 8pm, as pain is too high. Whatever you do, hope you feel reasonable this evening.

I am trying to pretend my leg pain is referred pain from my back. I am worried because, I think it's nerve pain returned. It's the snapping pain through my hip down my leg that I can before surgery. It started earlier today and is affecting my walking. I can't bear that I might have had surgery that I didn't need/didn't work. I don't want to be in the 'failed back surgery' camp. I want to be in the 'i went to london to see a top surgeon and look at me now, what a great decision that was!' camp. I know it's early days, but this doesn't feel like recovery pain. OK. So I said it. And I am not not going to talk about it again for a while. Next time I mention it, will be to say it's all ok.

I also had a phased return (not back related- several weeks in hospital - general organ shutdown etc) where I was paid for the day I attended and got sick pay for the days I didn't (each day was on a separate contract). I eventually resigned from my other days because it became obvious I could not return to my original hours.
I would say listen to the GP Pavlov, and your body and take it slowly. I tried to rush back to work because I thought I should and developed CFS/ME, which has left me semi disabled. Ok so this might have happened anyway but remember you must protect your health. You sound far too tired to consider going back to work yet a while. Frankly having energy to eat takes priority over work. (Stern look) And yes that is how I felt. Barely able to eat, hardly able to stand (legs would not hold me up)-too tired to talk and almost falling asleep in my dinner (once I survived that long) like a young child. Your energy systems are not working right yet- get that right first. (Voice of bitter experience). I hope your leg pain is just settling pain (grabs at straws too) .
YNK sorry your MRI result is worrying. Have you had a chance to discuss what treatment is advised?
Matilda is the friend one that would understand having a visit tailored to your need for rest (short and sweet)? Could you take a nice cushion or two if it has to be the hard seats pub?
Schmeegle hope your recovery is progressing OK, and you are taking care not to overdo it after your active day earlier this week. Its still such early days for you. Did you find a wedge cushion? I have uhm 4 - on different seats. I bought a air filled wobble wedge cushion ( compact B shaped for bum)but did not like the 'wobble' in the car - made me car sick and it was too wobbly going around corners and threw my weight onto the sore bits! However its great for the computer seat, and folds in2 for carrying out and about (work meetings etc). I have a thick Putnum foam wedge for the (sinky) sofa, (too high for the car seat - even petite little me bangs my head). The best for the car are a simple seat designed for the car (cheap and cheerful from Amazon, but only a small wedge angle, and a foam bum (B) shaped wedge again only a couple of degrees wedge which fits in the car well and was a cheapy from either Lidl or Aldi years ago.

Yes 3 months off after op (and 2 before). Leaflet I was given said 3 months was normal so I was determined to fit in lol. Then I did 10-2 for a few weeks then got made redundant anyway (we all did) so found a part-time job and never did go back to full-time. Of course not working at all now although eyeing up a charity shop.

Pavlov its too soon to panic - I had "remembered" pain in my legs so might just be that. Best get it checked out though. I'm sure my GP and physio were sick of me but we all get that panic thinking its come back.

Matilda like you I try and do normal things with friends but they have to understand if I am to drugged up for normal conversation or have to leave suddenly for a lie down, or spend time in the loo screaming. They can usually tell by my face when I am toiling (resting bitch face gets even worse!)

Lol Maggs what are we like - my home is littered with pads and cushions - another thing to shop for online. Still haven't got that hair brush yet though!

Well, I did go and actually by around six I was a bit better. It was real 'hit by a cricket bat' pain all day. I got a cab so no driving. We went to the more comfy of the two options and the seats were ok. Just. I did stand and stretch quite a lot. Food was surprisingly nice and we had a fab catch up. We don't live far apart but she's super busy so it's always a treat. Only down side was the noise. Big room and a huge party of about twenty lively people next to is and it was hard to hear and speak but we managed. It was nice to get home though.

The shock news is we are going out tonight, too . We are driving actress London to visit ds1 and have dinner in his part of town. So a lowish activity day. itching to use borrowed carper shampooer.

So what if tomorrow is another write off? I have to keep living somehow.

Just a moan really. Physio thought I had slipped disc in neck. Now my pain is more upper thorasic just below my neck. Still all same symptoms numb fingers sore elbow arm shoulder oh an now numb area on leg pins an needle left foot. I was improving slowly but he did some manipulation last night felt great last night agony today. I have some exercises to do too. but am just feeling pissed off with it now. Dh offered to clean house for me but he is working this morning so I have pottered round. I am gratefull to him but tbh the one thing that would help would be if he just dried the bloody dogs properly before letting them in. Sounds so petty but I haven't the strength to wash walls. it's like he doesn't even notice mud splattered walls fridge cooker cupboards arrgh I want to feel better an wash my walls. Bloody back bloody dogs and bloody he'll. will this ever get better

Hi op and thank for your kind workds. Its nice well comforting to hear others are going through the same shit.

I do have one question tough all these drucgs that are onthe new drivers list as of 2015 in march are all in up/l does any one know how these work in mg. My drugs dont affect me but i really dont want my licesce recoked for a year byttheDVLA and its a real concern as we live completly rurally. Does any one else worryaboutthis? It seems i shant be able to drive my new motability car,which is pointles. Am shitting my self!