Back to Back Trouble. The Back Pain Support Thread.

[Matildathecat]

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
www.mumsnet.com/Talk/general_health/2049637-Back-Again-Back-Pain-Support-Thread?msgid=47419209#47419209

And some other useful links and info:

www.patient.co.uk/health/cauda-equina-syndrome-leaflet

We have done the hard work for you and learned about effective drug combining. Using NSAIDs, a stomach protector, paracetamol with or without codeine (it enhances the codeine), nerve pain meds such as gabapentin and/or amytriptiline can all be more effective than simply taking huge doses of opiates. Of course most people won't need all of this but for severe prolonged back injuries this is helpful to know.

Heat, gentle exercise, TENs, medication patches, diazepam and accupuncture, we've tried them all.

So if you are suffering come and join us, were a social lot.

Haven't caught up properly yet, but welcome Bassett.

I seem to have got away with gardening again, though necking the pregalbin meant I slept through a big drama last night. Poor dh was dealing with our very distressed neighbour on his own. He is highly capable but if I had known I would have helped. I had literally no idea until this morning that anything had happened. Oops.

Just wanted to let you know I have found a great little app called tracknshare (though I will resist the urge to share) you input all the things you are interested in tracking, and it dos it all for you...in my case, pain, drugs, physio, exercise, mood, weight, water drunk...etc. it is nice that it is all in one app. 6.49 In Aussie dollars so more than I would normally spend on an app...but a few days in and it looks like it will be quite useful for both tracking and mindfulness.

Wishing you all a pain free week, especially you queen! Fingers crossed.

I am off to brisbane tomorrow, which means no picking up after kids and no driving for a few days. Bags packed :)

Hi, I've had back problems for the past 20+ years. Had an X-ray when it all started and I was told that I have a "boney abnormality" at the base of my spine. They said it could have been there since birth or could have happened since. I did hurt my back when I was 13, i was on a sledge and hit my back off a tree.

I've had 5 kids and am about 6 stone overweight so I know that will have a lot of bearing on my pain. The lastcouple of years it has been a lot worse. the pain is at the bottom of my back and bending down is incredibly hard for me as is standing from a sitting position. Turning over in bed is a challenge to.

I work on a checkout and the chairs are awful, little or no support! Even when I'm sitting I have a burning sensation at the based of my back. Dr wants me to self refer to physio. I'm so tired of the constant pain as are my family listening to me complaining about out it.

Sorry for the long post, feeling a bit down today

Hi Queen, glad to see your op went well and so useful to read all about it as might be me in a few months. I need to be walking before my first DC starts!

My injection has worn off and I am getting constant leg pain despite drugs - Tramadol, paracetamol and ibuprofen. I have diazepam still - 2mg and 5mg which I can take for 3 day periods with breaks due to bf. I also have oromorph but am trying not to take that, only took it during acute stage due to bf. any tips?

Kay, your place of work should provide you with a chair to suit you. You should ask for a work place assessment. This means someone will come in and assess you at your station and make suggestions as to how to make sure your working environment is not detrimental to your health. They should then get you an adjustable chair. The assessor will come back and fit it to you. Ask today and get it sorted, you shouldn't have to work in pain.

cold sorry your injection hasn't helped. I'm going to be honest and say I haven't heard anyone on here have much of a result from them and I've had 7 of the bloody things. I can't remember all your details but from your list there I can't see any nerve meds like gabapentin or amytriptiline. They actually really do work even though the side effects are a bit tiresome.

Are you able to consider this?

kay hello. That's a long time to suffer. Are you getting any meds from your GP? Also a diagnosis would be good so push for an MRI. Physio might help you release muscles and regain strength but after so long I'd be wanting a proper diagnosis.

Cold - I've spoken to my manager about the chairs at work but she said they've been checked and are ok, butthe majority are broken sso don't give the correct support. Don't want to make a fuss.

Matilda my Dr told me it's just normal wear and tear and to try physio. I have a history of health anxiety so I don't think they take me seriously. I did'nt mean it to sound like I've had constant pain for 20+ years, it's been intermitt.ent, but the last couple of years it's been pretty constant

I have to say, kudos to you mamas with chronic pain I'm on day 3 of my current back explosion and am a total space cadet on Diazepam. Supposed to take another dose about now, but Husbot has had to go into work for a couple of hours and I just don't feel capable to look after my 3yo feeling as dozy and dappy as I did all morning after my first couple of doses!

Things are definitely easing up, three physios have failed to return calls to me today (grrr) but also chasing up NHS referral.

How much back pain is idiopathic? Is there always a diagnosis? I do love a diagnosis, I don't deal very well with mysteries.

Um, idiopathic basically means 'we don't know' so I suppose anyone without a clear diagnosis has idiopathic pain. Not especially useful. However it is multi faceted. A combination of inflammation, muscular spasm, nerve entrapment, postural abnormality caused by spasm, tension from pain and on and on. So there is no one cure as such. It makes sense, therefore to have a sensible mixture of rest and helpful activity ie specialist back are exercises and walking. Not hoovering and carrying the shopping.

A firm diagnosis re disc prolapse, facet joint degeneration etc can only be made by MRI, but most physios will treat the pain without an exact diagnosis.

Fortunately chronic pain and acute pain are a bit different and if we treat it very carefully we can avoid too many flare ups and keep off the space cadet diazepam. . I like to know it's there, though, just in case.

Kay, who do you work for? If it is a big chain then just speak to facility management or hr for an assessment. You line manager might just not be aware of this.

Even in a smaller company you have the right to a safe working environment. A chair unfit for you is not safe.

I am BFing so don't know if I can take those nerve drugs. Will ask the breastfeeding network tomorrow though.

Any thoughts is to if it is worth taking the diazepam again? I have quite a high tolerance to drugs. Didn't really even notice when I was on 5mg, 2mg, 2mg.

Hiya all, soeey havent posted for a while but bit swamped sorting out benefits, switching to pregablin and going to alot of exercise or appts. Will post more tomorrow once reading is caught up but hello to newbies and well come.
cold I have a feeling you cant take the nerve drugs but ill look on the leaflet tomorrow. I also start to tolerate drugs very quickly- had that prob with gaba, think the pre-gab is actually slightly more effective and less sides so far.
have had a crap week exercise-wise, now feeling the bad effects of this. unfortunate;y couldnt rectify this today as the yoga class was cancelled and replaced with some kind of high-intensity bullshit hell called "insanity". insanity my arse.
so no joy=denied and have to wait until tomorrow to do something.
talk more tommorrow, hope you all have decent night's sleep tonight away from pain :)

Hello everyone, would like to know if anyone has an experience of this ......

I have constant pain in the top of my left buttock,next to my coccyx.

It's driving me mad, can only liken it to toothache.

Sometimes I have pain all across the bottom of my back, sometimes in my left hip and down my left leg.

If I lay down flat on my back it feels like the left side of my pelvis is titled upwards.

Had an xray of my hip and waiting for the results. The pain has got worse over the last week.

I have an appointment to see the Doctor again today, hoping for some suitable pain relief.

So is it possible that all this stems from a problem with my back and not my hip at all?

Thank you

Is it acceptable to join this thread if you have 'all over pain' as well as back pain?

I don't have any dramatic stories of major trauma or prolapsed discs, in fact I was told my MRI was fairly normal and my pain is mainly muscular (never mind the leg pains ). For the last 4 years it still fucking hurts though.

Just popped 2 prescription strength co-codamols and now waiting for something to happen. Having a flare up this last month or so, even a gentle a walk is challenging.

I find lorazepam (similar to diazepam) works quite well for the crampy muscle feeling, but they are a bit too 'nice', so I only tend to use them in the evenings if desperate.

this is a well come all,no judging, no competition thread eyebgs- so sorry you are having pain all over. has your doc checked for the stuff it might be like Fybromyalgia (this is diagnosed if it ISNT x,y,z and you have certain symptoms). The trouble with "fairly normal" is that alot of people get pain with that level of degeneration, could you access your scans again and get a better description? my MRI is also "normal" degeneration but i get pain and the consultant seemed to think it could be particularly from facet joint degeneration- you need to ask about this area in regard to your scan.
hiya 50knock , both me and at least one other poster on here have been told our pain was caused by our hip but later had eveidence of a spinal problem- both L4/5 in fact but thats the one most likely to show disc disease anyway. Push for a scan of your back too. I first told a doc my back hurt in 2009 when pg with my son and only got a mRI done recently- don't wait 5 yrs! there is a lack of "joined up treatment" in our nhs. I actually had to refer myself with my doctor a second time for physio for my back because they wouldnt look at it on the referral for my hip!!- luckily the next physio was much more helpful and is treating me holistically.
oh damn that remeinds me that i havent really done my physio exercises all week. get into a viscious cycle because the more I do them the better I feel generally. tried to go to yoga last night but it was cancelled and replaced with high intensity "insanity" wtaf!!
Have recently switched from gabapentin to pregablin bt think it seems a bit better for me so far. taking 100mg 3x a day . I was usually taking 800 3x of gabapentin so i'm not quite up to right dose yet, took 150 one day and it knocked me out so went back down. seeing doc about it today , how to proceed, check in, get prescriptions etc. have had a pretty bad week emotionally both me and dh so have lowered expectations a bit- and have needed codeine twice a day some days because the pregab is not quite covering it all yet. was maybe not the best time to switch but i did it so i could be stable by the time uni starts agin . low on funds so kept putting off my hair colouring but dh convinced me it's ok and have it booked for Friday now at 1pm, will ask to go as blonde as feasably, financially and stylistically possible :)
sorry for mahoosive post, hiya to all the newbies, sorry you are all in a position to join such a thread as this but glad to keep you company :) Just ocurred to me you might also like to check out the Fybromyalgia threads eyebags- one called "spooning into summer" approx I think was about that- they may have some ideas about it, associated symptoms etc- but still keep posting here if you want to of course.

also 50knock i second the toothache analogy- it's a good one actually becuse it the type of pain you can ignore at first but as it builds surrepticiosly suddenly it is just too much and you have to medicate, get a hottie and lie down for hours. I get pain in my coccyx quite a bit- think but dont know, that it's from the SI joint and the L5/S1 disc. I got "incomplete" scores on her SI joint exam- kinda makes me think they should re-do it, she did it at the speed of light too

Hello, I hope this is the right place for this, and apologies in advance for the length!

My potted history is that I have had 3 severe herniations at L5/S1 (twice) and L5/L4 (once)
I also have severe degeneration in my L4 and L2, facet joint syndrome, DDD and SI joint problems.

My last bad episode was 2 years ago when my L5/S1 went and caused Cauda Equina. I was booked in to the disc out and a fusion, when the surgeon decided I was regaining feeling in my foot and therefore the nerve pain was easing enough to have a microdisectomy instead.
On top of this, I've had injections at various times over the last 10 years..

So, if you are still reading..! DH and I have started IVF this week, so in preparation for this, I went back to my consultant to see what special precautions I should be taking if/when I get pregnant. He rescanned me, and the MRI has shown some more degeneration ii the last 2 years, but not at an alarming rate, and also that my L5/S1 has now lost so much height as to be more or less non-existent. It is still bulging quite badly from the 'sideways on' scans, but the cross section shows that the material is far away enough from the nerve root to not pose any sort of immediate danger of another cauda equina.

He was very relaxed about pregnancy and said I should be ok as long as I stick with the core work, and that he can inject with (without steroids) once I'm pregnant if I get into difficulty. I'm fine with all of this.

My bigger concern is about birth. I said to him that I have read that the general consensus is to err on the side of caution with an ELCS, and this would be my preference, but my local hospital is notoriously strict about them and very, very reluctant to do them, so I would ideally need to him write me a supporting letter.
His response was 'None of that. I think blood, sweat and tears is part of the bonding process, and a bit of pain will make you realise it is all worthwhile'. I was quite taken aback, but did my usual 'don't question authority' thing, and didn't say anything else.

But having done a big google in the last 24 hours, I'm now quite anxious about it all. I've read lots of stories of people with fewer pre-existing problems than me having fusions after VBs, and lots of stories of failed epidurals due to scar tissue/disc problems.

I generally trust my surgeon. He made a promise that he would avoid all unnecessary surgery, which he has done. He has also taken all my pain concerns very seriously, and I think he is genuinely the best at lumber issues. But I suspect he has an ideological approach to childbirth which is not what I want right now!

I'm trying to make the next few weeks as zen like as possible during out treatment, so if anyone has any pearls of wisdom (or knows the names of any ObsGyns in London who know about back problems, I would be eternally grateful. And if this is in the wrong place, please let me know and I'll get it moved.

Maiziemonkey
Thanks for your reply.

My scan said disc dehydration at two locations with "minor loss of disc space height" and also some "distal facet joint degeneration". The GP said this was basically insignificant and in the 'old days' would be a 'normal' x-ray.

Hence I was sent to the pain clinic, they said my pain was basically muscular, similar to fibromyalgia but I don't meet the diagnostic criteria for that either.

To be honest I'm past really caring what causes the pain and even if I did have major prolapse disc I don't think I would want surgery unless I had red flag symptoms.

I'm just fed up with the pain..... but aren't we all.

Hi, I am back from holiday! I will read and post probably tonight, but hi to everyone, newbies included

eyebags- your GP sounds a bit "old-skool" using the nice version. It is pretty established that not much is truly established about why some people with a similar scan will feel pain and the next will not. but pain is a very complex issue. I don't really agree with their reasons why your pain is muscular- and again, not joined up thinking because the muscles, nerve fibres, bone, etc all exist in the same place, probs with one might start off secondary probs with another. i feel thats the case with myself- several diff drugs work but no one drug is taking it "all away".
Are you still seeing the pain clinic? what meds and traetments are you doing and are thre other gp's in the same practice you could get a second opinion from? as matilda said above there is some wisdom in learning the Alexander technique and several on here are finding the "back bible" by sarah keyes helpful- in situationns where you are forced to take responsibility for your own improvement if some or all hcp's have pretty much given up. what the holy whatsit does the gp's statement do to help you? oh i'm normal so i'm fine with being in pain all the sodding time?? nope, try again Dr
sparechange, I do hear you about the elcs, but I have the opposite view because i had emcs with 1st pg and i think(and couple physios too) that my problems statrted after that patly because the stomach muscles were totally cut through (as they always are) and this would affect core stability, posture, alot of things and i had two and a half yrs between pg's- maybe not quite enought o totally heal and be strong in my core and deep spinal supporting muscles. I had spd with first pg and this makes everything move around more and causes inflammation, alot of pain. pain for a long time can change how the core works, how you move andhold yourself- so long story short- I would try to have a vb, it is the less risky option- but i'm not a doc, this might be behind you doc's thinking though, got to run, doc appt

queen quick quick post for you, re nerve pain post op, it can take up to 18 months for nerve pain to subside post surgery. So, do give it lots and lots of time, continued nerve pain doesn't mean it's not successful, or that the pain will remain forever. I had complete numb toes, the two end ones on my left foot, and a huge permanently numb patch on my left calf, and it took about 4 months for those to disappear completely. They now return from time to time, but not permanent as before.

Maizie Thanks for your reply
One of the stories I read was a women with disc issues who had an EMCS, where they couldn't get the epidural in because of scar tissue, so she had to have a general. And by the time that was done, the baby was in more distress and they had to do a much bigger incision that normal, which took longer to recover from.
So my interpretation of this would be the risks of a ELCS would be lower than an attempt at a VB that turned into a EMCS, but happy to be corrected by those who know more than me?

50knocking, sounds like my pain. Mine is a buldging disc L5.

"Dear Mrs Pavlov,
My Apologies for not writing back to you following your previous imaging. I've been contacted by Dr Dingus from the Pain Clinic who is keen to know whether or not further surgery would be of benefit to you. I think in honesty, as I said to you in clinic, I have my doubts that surgery is going to improve your symptoms but you do have a potential surgical target, in other words it is most likely though far from guaranteed that some of your symptoms may be coming from the bottom of back where you had previous surgery and the nerves have been decompressed, but where there may still be some irritation of the nerves as well as some wear and tear changes such that movement at that level of the spine may be causing your back pain.
Surgery to treat this would be a far bigger undertaking than previously and I do have concerns that this may not be what you require in order to either improve or alleviate entirely your symptoms. It's certainly the case that I don't think surgery will offer you 100% improvement even if improvement were likely to occur. If you wish to consider surgery could you let my secretary know that you'd like to meet with me again in clinic and we can arrange this and if not or if following that meeting we conclude further surgery is not advisable, I will ask Dr Dingus to continue with his plan to treat you and hopefully control your symptoms.
Yours sincerely
Mr Arrogant.
Plan: Await patient's decision."

So, this is the letter I got following the neurosurgeon appointment in April. That appointment was in response to my surgery follow-up in November 2013 (surgery in June 2013), where he said he thought the disc might have re-prolapsed, and ordered a flexion x-ray and MRI. I waited until March? (can't even remember) for a letter to say, a shorter version of above, with the outcome 'await patients decision' and I called to see him to discuss the 'changes' that he refuses to tell me about. From that meeting, he ordered another flexion x-ray and MRI, and then wrote this. Again but with more fluff in the middle! It's taken since April to get this letter, with the pain clinic guy chasing, and me chasing. FFS!

And. WTAF does it say? I need to make a decision about whether I want a non-specified surgery on a non-specified bit of spine, to potentially not fix an unspecified problem that he doesn't want to fix. Or, I can continue to not really be seen for non-treatment by the pain clinic! (ok, not entirely true, I am due to have the ridiculously unsuccessful epidural steroid injection on friday).

What are your thoughts on what he is saying? DH is of the opinion that he is being careful, as I felt in his last letter, to not tell me what is wrong. I read '...such that movement at that level of the spine might be causing your back pain' as being the vertebral movement which the pain clinic doc saw on the x-ray. And ...'it is most likely, but far from guaranteed (wtf!) that some of your symptoms are coming from the bottom of your back where you had surgery and your nerves were decompressed, but where there may still be some irritation of the nerves' to mean that there is either a continued/new prolapse, or the nerves are damaged? Or, could he mean there is scarring? as he is keen to not say 'at the site of the surgery, there xyz going on'.

I am definitely glad I am getting my second opinion in London. I also intend to request ALL my notes, and my scans/x-rays on disc, as I am not keen on his caginess.

50knocking I had severe pain just as you described with prolapsed l5/s1 disc that was trapping the sciatic nerve. It's entirely possible that there is no, or very little back pain, and horrendous nerve pain, and when that happens the pain can appear to be from the hip and buttocks as that is where the sciatic nerve runs through. If you get no joy from the scan of the hip, ask for lumbar MRI.

and re my letter. Despite him not using certain words I know that the surgery he is talking about is fusion, so he might as well just say it. And I know the area in question is L5/S1, and possible L5/L4 now. And that it is likely related to the disc(s) and also to the vertebrae being misaligned, so why doesn't he just say what the fuck is actually going on. with real words?!