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

mags I think you might be right about surgery maybe not helping much now, in terms of numbness/weakness, but explore the options for pain relief. I found my first surgery did help significantly in terms of managing the pain. And, actually, the numb toes did ease, took a while but I got feeling back, which I never thought I would. Still have calf weakness, and can't raise on left foot, almost at all, but the pain is now my right side! I am not saying go for surgery, but keep your options open.

Good news from me - I have been camping apart from a few back unrelated dramas (car crash right by where our tent was, on a country road, mattress deflating just before bed, finding a small tear and no puncture kit, puking after meds, fish and chips and prosecco) it was lovely. My back mostly behaved and I put it largely down to the acupuncture. I really think it has helped a lot. Physio was clear that this is not a cure, but will hopefully give my muscles a break and a chance to recover and get moving normally again (like they've said with injections etc!). And, goodness knows why, but I have not, as yet, had horrendous payback. Pain and stiffness yes, but nothing like I was expecting. I did feel rough at work yesterday, before realising at 11:30am that I had forgotten to take my med had to leave early, take them, sleep while they kicked in. Better today!

Not much else to add about the gabapentin, just to echo wehat matilda has said. She's the expert on these. The side effects take a while to wear off, and the pain relief can be slow coming, but in general it does work well for nerve pain. Just not for me (well, it did, I just turned into a proper zombie!).

Ladies - I do have a question. I know that our meds turn us all goofy, and I have regular bouts of forgetfulness, the children are known to finish my sentences for me (normally with the answer they want, not what I am about to give!).

But, recently, this has got worse, over the last week or two. I have really struggled with some simple words, to find them. My colleagues are looking at me like this and I am getting very embarrassed. DH is also commenting, which means it must be bad as he doesn't normally comment much about it any more. In particular I could not think of the word 'wash bag'. I kept saying 'the thing with our cleaning stuff in, you know laundry type stuff for us, toothpaste bad' and couldn't find the word 'toiletries' either. For several days, kept losing these words!

Why? Any ideas? Meds are mostly the same as always. Just losing the plot?!

How old are you Pav? I have been forgetting stuff for years (menopause, drugs, 50s) and recently have begun to substitute the wrong word and struggle to think how to spell things .. I am hoping this is normal too. Can be quite funny though as I told hubby I had cancelled the abortion (biopsy actually hmmmm

Oh Pav, thats been happening to me for years! Like Ali I blame my age - but some days the word finding is worse than others. Meds and poor sleep don't help of course. Stress, busy schedules and too many things too remember can clog up a brain - I fear. The harder I try to remember a word the more blank my brain becomes. However the missing word will sometimes pop into my head when I give up and go onto something else! Glad you enjoyed the camping, despite it all, and are not suffering too badly.

mags scrap that 'doing well' malarky. I fucked it up by saying it all out loud. I am in bed, in huge amounts of pain, having walked. I simply can't walk anywhere. Or else it sends my spine into complete spasm and sciatic pain ramps up. I walked for 10 mins to a housing appt with a client. 10 mins back about 1.5 hours later. 30 seconds from work lift to car. 5 mins from car to shoe shop with DD, 5 mins to bus stop, 2 mins from bus stop to home. Fucked. But was like that by the time I left work and just kept going as had to get DDs shoes measured. Now even lying down isn't helping. I need meds. I can't get up to get them, need to ask DH. He has already brought me up omelette and a drink.

I am 37. Almost 38. Please don't say it's my age! Not yet!

ali oops to your word substitute! DH picked me up and said 'where do you want to be dropped off?' 'er..well..er, the big place. in the, er, centre of, where shops are, in, erm, help me here?!!' 'i don't know where you want to go? Clarks?' 'no! that's not in that big place, in the centre, the central place...' 'centre of what?!' and DD pipes up 'd'you mean the Mall mummy?' 'yes!! that's it, the Mall!' FFS. DH laughed his ass off, I went to give him a dead leg, hit the gearstick and hurt my finger. He howled even more. Fucker.

This evening, DD asked me to tell her about some things when I was younger, asked me some specifics, i just could not find the words to form the sentences, had to say 'don't want to speak now baby, very tired, tell me about your day, i'll like to hear that' and just lay in silence as she told me about her fun things.

Well gabapentin is very well known for the dreaded word searching. As I well know. Worth going through all meds and double checking for this as a side effect. Plus stress, tiredness and becoming aware of the issue which makes it worse. I hateit when 'helpful' people fill in my pauses and even if they guess right I'll say, no...I meant x. I'm now really mindful of not doing it to the elderly or anyone who takes their time.

But yes, it's bloody annoying. Tramadol, perhaps?

And somebody seems to have knocked a nail into my butt which is causing a fiery pain into my foot. That along with the cricket bat that whacked me across the back, I feel your pain, Pavlov. Anyone else? .

Oh no! Matilda and Pavlov. I've got 'tooth ache' in my good leg (never mind the bad one)- not sciatic pain - its on the front of the thigh.Annoying. By the end of a working day I can barely speak and have been known to fall asleep at the dinner table - too tired to eat (DH usually cooks on my working day- bless him). The word searching drives me mad too. Maybe its the combination of drugs, poor sleep, and motherhood (and the way your nonverbal multitasking forever alert instinctive-danger detecting brain take over and cannot rest even when asleep). Pav - can't blame your age - far too youthful. (Hugs)

matilda maybe we are in tune, sympathy pain or something, seeing as we have shared lunch and stuff sorry you are in pain too, anything to trigger the particular increase, or just one of those fucking unidentified reasons (like mine. I can go camping and be reasonable. I can't walk 10 mins and back to a bloody housing office on flat ground then linger for an hour and a half).

and sorry you are too in pain too mags i love the expression 'tooth ache' it's so accurate. It could still be nerve pain in the front of the thigh, I think it's the femoral nerve? Depends on what nerve is being trapped. And I read up about that recently, one nerve enters at one level, one nerve exits at the same level, so depends on what level and whether it's the entry or exit nerve, so not always simply 'sciatic nerve'. And MRIs don't tell us if it's entry or exit nerve impingement, but apparently it makes a difference to the symptoms of nerve entrapment caused. It could also be muscle spasm, as physio said that tight muscles in the back/butt/hip can refer into the top of the thighs. What to do about it? that I don't know.

I expect it is probably tramadol related and pain related and tiredness related and too much input into my tired mind related, this memory loss. but, those things are not new! Maybe my brain is just not coping so well after so long. I know my patience with it all is wearing bloody thin.

I am thoroughly miserable about it. Not sad. Cross. Tearful, but angry tearful. DH said 'do you want me to sit with you for a bit, we can watch some TV in bed?' (he rarely does that, normally goes out when I am in pain as I go to sleep). I told him he might as well go out as I am in a filthy mood and not much company!

sick of always having to plan in advance, consider, adjust, change, omit things to make other things possible, and still not guarantee I can do those things, so not even really planning (hoping), not having spontaneity any more, nothing is carefree and just fun, there is always a price for that fun now, having payback for everything pain wise, having to take meds that fuck up my brain, and my energy levels and my sex life and my social life, the children having to cheer me up, or make sacrifices (DD offered to give me a piggy back in town this evening 'i can almost pick xxx up now, I might be able to do it, then you won't have to walk', she was mostly jesting, but some seriousness of not being able to help was there), or miss me sometimes in the evening as I cave in and have less input as I like, of my career being halted, not being able too much that involves me being relied upon at work (suggestions of me being the housing/homeless team link due to my determination to make them do their jobs). Sick of everything being so fucking hard, all the time with no end in sight.

And, sick of actually feeling sick. I've taken 60mg of codeine, now feel like I'm gonna puke. So that means anti sickness meds. more meds.

OK. Rant over. Done.

Sorry you guys are in so much pain Pav and Matilda

I think it may well be the drugs with you Pav as you are young (to me).

Oh I hate the "toothache" in the front of my thighs thing - can't sleep a wink when I get that .... no idea what its about

Rant away Pav ... we agree . Hope today is better for everybody!

Thanks for the PMs - I've not been on here for a couple weeks. I am very low today, and hoped someone would understand....

So today I came home to a letter from the surgeon who says there's no 'compression of the nerves nor any particular disc bulge - and further surgery would not be helpful to you' I'm weirdly very disappointed with this outcome (although I don't want more surgery) as my symptoms continue to be worse. I have expanding numbness in my right foot, spreading back to my heel, and into my calf. I also have new numbness between my legs - which I have never had before - , and into the area around my rectum (reported via my GP, to the neurosurgery team, as I panicked re:cauda equina) although my continence has not been affected to date, thankfully.

My pain has also continued to get significantly worse, to the extent I am on the same level of medication I was before my initial microdiscectomy last September. I also now have nerve pain down my left buttock and thigh, which I did not have 6 months ago. This is coupled with new symptoms which are concerning to me, including tingling in my centre back (between shoulder blades) and some pain and numbness down my right arm.

I am, quite simply, exhausted by all this. I am 40 years old, and feel that just carrying on with painkillers, as symptoms get worse, isn't how I want to exist. A suggestion is that I am referred locally to the chronic pain clinic.

I can't stop crying. DP doesn't know what to do with me. Does anyone have any thoughts or advice at all please?

Oops. Should have been not even 40. I'm 36. Seriously. Is this it?

casper oh how stressful for you! What does your GP say? Has he done tests for anything else that could be causing the pain/numbness? It can't be nothing, so if not disc etc, it has to be something else and the GP must explore every possible avenue until you have some idea what's going on, then treatment put in place.

How old is the MRI? If it's older than a few months, given the saddle changes, I would request a new one.

Did the surgeon say anything else such as whether the facet joints are in good shape, mentioned your sacroiliac area etc, or was he just simply looking at discs and that's it. My first surgeon was very much like this 'you have a mild disc prolapse, some changes, nothing to warrant surgery'. In fact, I had spinal stenosis, factor joint inflammation etc etc, but what he was looking at was purely 'is there a surgical target that I can address to fix the problem' and his answer was no (he was wrong). Outside of that he was not interested in any further diagnosis, that was someone else's job as far as he was concerned. He just failed to tell me who that would be.

Do you have a pain clinic doctor? I wonder, if you do (or if you don't, ask to be referred) if you could go through the MRI results with him. My pain clinic doctor did this (had to get past the clinical specialist physio first, took a few appointments!), went through the scan and showed where there was no prolapse in the location where there had originally been, where the mild but not obstructive bulge was (and in fact showed that it was more significant than the surgeon had me believe), and also facet joint inflammation, end plate inflammation etc.

The surgeon dismissed me in a way that suggested there wasn't really anything wrong. But there was, and is, a lot wrong.

Following my experience with the first consultant, I sought a second opinion. Can you do that? I am sorry if I have forgotten things, maybe you have had a second opinion already. If not, ask your GP to refer to somewhere else (some of us can offer some recommendations for second opinions). It is your right to ask for this, and to specify the consultant you see (you probably already know this).

So frustrated for you. It's worse to find nothing identified by the consultant, because you know there is something causing the pain and the numbness, but you don't have the answers yet.

You're a year younger than me. I have had that question many times. and, as recently as yesterday I too was crying, asking myself that exact question 'is this it?' and sobbed to my DH that my life was not meant to be like this, it's now how it was supposed to have turned out.

I know that probably doesn't help, as I personally cannot say 'this will get better' because I don't know, and have given up on it getting better for now for my own situation, but, maybe it helps to know that you are not alone in the despair you are feeling. I hear you.

Oh Pavlov. You've just made me cry harder by being so kind and helpful. In my state I realise I haven't properly explained....

I see this consultant on 8th July. I have had 2 surgeries previously, with a different surgeon, at a different hospital. I've now been referred to this one, who is the lead for clinical neurosurgery for Scotland.

I've not seen my GP again - the letter only came in today, and by the time I got home from work and opened it, it's too late. I'm inclined to see the surgeon in a fortnight and take it from there. I've not seen any pain specialists yet. My latest MRI was done at end of May, but the numbness has gotten worse since. No further info re facet joints, etc, but DP and I are making a list of things to ask at the moment, and I'll add those - thank you so much.

DP has already said we'll do what it takes to find money to be seen privately if necessary - but it feels like I shouldn't have to. If anyone has any recommendations - I'm just outside Edinburgh - I'd be grateful to have them.

I'm having a proper pity party tonight. Sorry. I'm really sorry that you are feeling so low about things too. I am thinking of you and can only hope that something can be done to help you as well.

Does anyone else find that TOTM reduces the effect of painkillers? It's the only thing I can think to put it down to.
I have taken everything in my arsenal tonight; ibuprofen, codeine, paracetamol, Gabapentin, diazepam and I've clarted on a handful of deep heat and I am in AGONY. It's as if they have just stopped working.
Anyone find this?

TOTM? Sorry. I don't understand...

casper sorry, you did say that in another thread, I remember reading about seeing the guy in scotland. The thing is, with shit going on for so long, with two surgeries, lots of inflammation, what was once a disc problem could have become something else now (not saying to scare you, but that the consultants make it sound so simple - you had a prolapsed disc. now you don't. go away). I had trapped nerve due to prolapsed disc, surgery in 2013, then another surgery in Jan this year. I also had an injury to my spine in 2010 which might or might not have (probably did) contribute/cause my prolapsed disc. I have a slight retrolestheis caused most likely by the injury. So, the facet joint problems etc, the moving upwards to the next disc level could well be because the injury caused more trauma than i realised.

or, it could be the length of time there has been long term inflammation. Which is chemical and toxic, and a can cause problems. I wonder how much of my problem is due to injury and how much due to bodily reaction to inflammation, surgeries etc.

Other things to ask are around whether there is discogenic pain, possible infection in the spine, what is the condition of the discs themselves, any issues with ligaments, bone spurs/stenosis.

I'm sorry I made you cry more but know what you mean. When someone says something nice if I am tearful, makes me cry more, especially when i know they 'get it'.

Glad you DH is fighting your corner with you. I absolutely agree that you should not have to pay for second opinion, but if you have to, to get it done quickly, then do so. Not sure how the 'rules' work in scotland re second opinions, can't imagine they are hugely different, but I know NHS England has to give you a second opinion wherever you choose.

My consultant is in London, probably much too far for you to travel to. I travelled from Deep South West of England, and had surgery in London, travelled back (thanks to oramorph, valium, tramadol, codeine but a huge distance for you.

I am sure others will have closer recommendations for you.

I have jabbered on, sorry if I have bored you/taught you to suck eggs/repeated stuff you already know from previous posters. I have had more tramadol than is good for me at this time of night and it makes me talk too much and type fast. DH is asleep next to me, I am normally asleep by 8:30-9pm these days due to high pain/exhaustion, but not today! I will be awake for hours I think.

cain have you just recently started the gapabentin? How recently did you titrate your dose upward? (I think you said, I am being too lazy to scroll down ). Is the pain mostly nerve pain? if so, unfortunately, there will be times when the tramadol/codiene/diazepam doesn't touch it, as they are not nerve targeted painkillers. They help nerve pain in that they reduce muscle spasm and the pain from muscles/ligaments etc that might be pressing on nerves and releasing some pressure, but if the pain is actual nerve pain, that's probably why your pain has not reduced.

Nerve pain is a fucking pig. And gapapentin works brilliantly but it takes a little while to a) build up in the system and start working and b) to titrate to a good level that it works effectively (that dose varies for each person). If you are due to work up to the next dose, call your GP tomorrow and ask him what dose you should go up to (don't do it without GP advice)

Are you taking gabapentin at night time? If not, might be worth taking the dose then, as it can make you drowsy so even if not helping the pain yet, it may help you sleep and try to ignore the pain by being zonked out.

and also another 'what does TOTM mean' here!

TOTM/time of the month. Sorry, was being lazy.
I think the lights went out shortly after posting that so it obviously did work but now I'm awake again and in pain.
Started taking Gabapentin last Friday, after speaking to GP on Tues skipped a few days onto full dose yesterday. 300mg 3x per day. I will phone GP in the morning and ask about increasing.
It is nerve pain, sciatic and 'fucking pig' is spot on.
Thanks

Cain, I'm sure that fluctuations in hormonal levels do affect our pain even if we are usually not aware of it. They affect everything else, so why not?! May I suggest (again?) adding amitriptyline at night? It will give you yet more dopiness for a while but I take gabapentin at approx 9am, 1pm and 6pm plus amitriptyline 10-20 mgs at night and mainly my nerve pain is better controlled than my back pain. Not always but mostly. Yesterday all else failed and I added 5mg diazepam after an especially bad time in Waitrose ( couldn't move) and that did help loosen me up again.

The problem with all of this is that it's so complicated. One thing leads to another and another.

Casper, I will pm you. I'm going to post this, though, in case it's helpful to anyone else. I am NOT trying to scare you. After my first discectomy I got worse, much worse. My leg pain increased, I was unsteady and my back pain was almost as bad or worse,too. I was terrified. At my post op meeting I was reassured all was well. Had an MRI and again told all good, no nerve compression. A few months later I was reviewed by another consultant who immediately pointed out, 'very significant nerve compression. This was caused by a huge amount of scar tissue formed around the nerve root. (In fact, the worst he had ever seen). So, yes, most definitely seek another opinion. And in my case it was the same MRI being reviewed.

Subsequent surgery to attempt to remove the scar tissue revealed a nerve root injury that could only have been sustained at the first surgery. This is an ongoing issue. Unfortunately the scarring which was very stuck to the nerves, grew back and I am now stuck in chronic pain management. As I say, I'm not writing this to scare you but to highlight the absolute need for a second opinion and to push for answers. 'So if it isn't my disc, what is causing this awful pain?'

Commiserations to all. It is a bloody misery.

I've got to phone the GP this afternoon so will ask about getting some amitriptyline. Thanks Matilda

Thank you, Matilda. I really appreciate all the input from you and others. It's giving me a list of very good questions to ask when I see the consultant in 10 days. I do need to know what the scenarios may be - I'm a 'I'd rather know, even if it's terrible news' type person.

I'm being a bit useless at work today, to be honest. I need to find some answers. The outcome was in a 5 line letter, and I feel really let down, and left in limbo. So - all the help here is hugely appreciated.

I am going to go in there as the best informed, most assertive patient ever - and try not to sob on him....