The Back Story

[Matildathecat]

Hi to all fellow back sufferers. I've been on Spooning for a while but don't really feel I fit as I'm not actually ill, just have a chronic (and permanent) back injury. So please post here, no niggle too small. We can share experiences, tips and moans!

Quick history, age 48, last year had sudden crippling back pain eventually diagnosed as disc prolapse L4/5. All conventional treatments tried and failed so had micro discectomy privately.

No progress, and much worse leg pain followed. V long story short was finally seen by second neurosurgeon who diagnosed severe scarring around the nerve root as a result of the surgery. Poor outlook for surgery but we gave it a go, so had second op with similar lack of progress and final MRI showed even worse scarring. Only option chronic pain management . Had several injections with not much effect...

So, permanently disabled, use a stick, endless drugs and a lovely blue badge. Along the way dismissed from career of 25years for ill health.

Sorry, it's a grim story, but hey, I'm ok. Not depressed, have an okish quality of life with the help of my fantastic husband and friends. I walk, albeit slowly and not far, swim a bit and can please myself. Luckily my boys are young adults.

So come along and share. Moans and groans ok, tips and recommendations welcome.

Just don't tell me to see your lovely chiropractor, I might just punch you!(wink)

I've got Sacro-illiac joint dysfunction as a result of severe SPD for 17 years!

I have had both my SI joints fused with hollow bolts that run from my hips, they are filled with a synthetic bone paste which makes them really solid.

I have regular steroid injections into my SI joints, but the last one I had in April nicked my S1 nerve so I have a numb left leg and foot. The only thing they can offer me now is it continue tight the steroids or radio frequency denovation. I am in 2 minds about the denovation.

I already walk with 2 sticks, don't do any exercise because everything, including swimming sets me off.

I'm not depressed either, I make the best of what I have got. My husband still clings on to a bit of hope I will get better, my kids (16&18) are amazing. I worry I put on them too much sometimes, but they say I don't.

I am 36, two children, DD aged 7 and DS aged almost 4. I had an injury about 3 years ago, which it is suspected might have chipped my vertebrae at L5/S1 but was undiagnosed due to other injuries (broken nose, cut to head etc), and was also pushed out of alignment. This may have, in time, caused the disc to become prolapsed and I have suffered for almost two years with severe back pain and trapped sciatic nerve, rendering my left left almost un-moveable (this theory is only a theory that came about as as a result of a) a MNer reminding me of this injury and b) the neurosurgeon finally seeing my MRI just prior to surgery and spotting the misalignment, after so long, he did say it may just be one of those things, but the timing of injury followed by back pain is quite coincidental).

So, following a lot of anguish, pain, waiting, waiting, hanging on to my job by the skin of my teeth, my children suffering my relationship suffering, my friendships suffering, I had micro-discectomy in June this year to fix the disc prolapse, it was largely successful but not fully completed as to do so would have meant fusion too as laminectomy on both sides would have made my vertebrae more unstable than it is already. The misalignment was not fixed as not significant enough to risk fusion right now.

I am now back at the gym doing intense physio including cross trainer, swiss ball and swimming, along with body balance. I have just recently stopped walking with my crutches, although I have to take them with me if it's unknown terrain. I have to wear trainers, and still have constant back pain, and my back gives way daily (so probably should have my crutch most of the time but am stubborn).

I am back at work, but it is so tiring, it hurts my back to sit for so long and there is only so often i can get up and walk around without my work being seriously affected.

I am still waiting for my follow-up with the neurosurgeon, 14 weeks post-surgery and so don't know if the misalignment is going to continue causing problems - if so, fusion will be the only option further down the line, but for now I am managing.

Depression? Mmm, the jury is out on this one. I have fought long and hard to not be depressed, to not let this get to me. I think, finally, I might be failing at that, despite being in a better medical shape than I have for two years. The damage this has done to every fibre of my life has been epic and only now I am coming out of that fog of 8/10 pain constantly, can I see the aftermath of it, and trying to pick up some of those pieces, and I think that is what is affecting me now.

matilda I am no sorry you are in such a shit position, how horrible and how amazing of you to be able to get on with life so positively.

littlemisswise that's awful! What a horrible position to be in.

LMW that's awful! but lovely yo meet you. 17 years is a really long time. Can I ask if you've been on meds all that time? The long term effects do worry me but life would be unimaginably terrible without...glad you are keeping cheerful ish,it's hard work sometimes isn't it?

pavlov hello again! I think I was definitely down after my ops when I kind of just 'knew' it had all gone wrong. I def have some issues which I have boxed away for now, marked 'deal with later' .your back sounds as if it has improved so that's great. Do you think your regime might be a bit too much? I do have a hydro program that is do-able most days and I told you how I get round swimming. It's so frustrating though. I used to be sooo fit.

I am starting a Pain Mangement course next week so will report back if I glean any nuggets of info. Tbh I'm a bit doubtful but willing to give it a go. At least it's a regular fixture, I miss the former structure of life so much. Meeting for coffee etc used to be a treat, now it's all I do, bar medical appts.

Oh good luck with pain management course! I did an expert patients course, which was CBT oriented I guess, it was about coping with chronic health conditions and was really quite useful. I mean, it was stuff I knew but didn't really practise like I should and it was great to talk to others who had illness and disabilities that affected their every day life, how they cope, their advice and also to just not feel like I was the only one struggling, and people who actually got it, how bad it all could feel, even on 'good' days. It's run by people with chronic conditions themselves so they come from a place of understanding, but it's an accredited course so is properly structured. Oh and they supply biscuits . Might be worth looking into at some point.

Do tell us how the pain management course goes, if you find any of it helpful. I was put on a waiting list, but I suspect that means it was filed in the bin...

Have either of you - or others who come along - had OH assessments at home? A friend of mine has just had this for her back problems (adult diagnosed spina bifida, diagnosed at 39, suffered for years being told it was hip related!) and has been given some things to help - a chair for her bath, some railings put in up her steps into the house, and a few other things. Also a friend of mine who has RSI/Carpal Tunnel had OH assessment and they had all her handles in the house changed, doors, cupboard doors etc, so she could open and close things more easily. If you haven't had it done, might be worth getting it done for some advice/help with small changes that might help around the house - you probably have had it though so might be teaching you all to suck eggs!

Sorry, didn't mean to be rude this slipped off the threads I'm on bit!

Matilda I have been on meds constantly for 9 years now. I had the front of my pelvis fused, which failed, so started taking the meds then. I had it redone 6 years ago.

The meds don't make a great deal of difference to me, tbh. Tramadol helps but I can't stand the side effects and they give me terrible migraines. I am too scared to take Morphine (have been offered it lots of times) because I worry about becoming resistant to it.

At the moment DH left for a four month tour of duty 3 weeks ago so it's just me and the boys. Usually I have a GA and multiple steroid injections into my pelvis every 3 months, but decided that I didn't want to put on my boys, especially DS1 who would have been doing all the driving and running around. I am scheduled to have them the end of January so it will be five months.

I've had an OT assessment. I have aids which make things easier for me.

Wow LMW, that sounds incredibly difficult. I agree about the meds, it's so hard to be both pain free and functional. Will the injection that went wrong wear off at some point? I had L5 done a few weeks back and I think it's just kicking in but I keep wobbling over. I find it so hard to say what works and what doesn't because it's different every day! Jan sounds a long time to wait, I hope you'll be ok and your DH stays safe.

Pavlov, I remember you discussing the big shoe issue. Same for me and at 5'2 I could do with a heel. Anyway I just got these www.office.co.uk/view/product/office_catalog/2,17/1471402472 and it's like walking on air with very little incline of the foot. Also some beautiful boots from john lewis.

Anyway, hi to all back sufferers, twinge or wreck(me!). Enjoy the sun!

Hi all, fellow back pain sufferer here. Have had on off chronic back pain for 30 years since a slipped disc which gave me very painful sciatica at age 19. It's affected my whole life and every health professional has given me a different diagnosis ever since. Different leg lengths, tilted pelvis, chemical change to the nerves, emotional causes etc. So frustrating! Have had chiropractor, osteopathy, physio, acupuncture, deep tissue massage, painkillers, was on traction for 3 weeks and had to walk with a stick for a year when I was 19. Worst thing is that I look totally fine from the outside and people can sometimes be v unkind and unsympathetic as they don't realise how painful and tiring certain normal activities can be. Tried to self manage with Pilates and yoga which can help but sometimes just aggravate it. Some days I just feel sorry for myself but know it could be much worse. Big hugs to all if you struggling with back problems, it affects every area if your life.

Hi, chronic pain all my adult life, made worse by falling off a horse 14 years ago and causing a disc prolapse and damaging the ligaments in my left sacroilliac joint. Went through a course of injections of glucose into the joint to try to irritate the ligaments into growing/strengthing.....Then offered joint fusion surgery, but it only promised more stability, not less pain, so did pain management course, hydotherapy and pensioner yoga.

Pain management was good for slowly getting moving again without doing too much too soon and ending up fucked. Also helped me accept the pain. Managed pregnancy 8 years ago okayish, but was utterly scunnered having to look after DD as a baby and toddler.

Have got used to lower back hurting and referred pain in my leg. However in the last year, new parts of my back are starting to moan. Physio on and off for the last few months, as my neck has been sore with arm pain. Am now in the weird position that private health insurance won't pay for more physio until I've seen a neurosurgon, even though I'm loads better than I was a few months ago. I wonder if there will be suggestions for surgery for profit rather than more phsio.......

Drug wise, currently coodamoyal and amytryptaline. Can't stomach naproxen etc, tramadol is too odd.

Hi scarlet and peri

Nice to meet you both. I am sooo glad my kids were grown up when this happened. Total respect to you,peri, for managing a baby and toddler.

I went to a different pain clinic yesterday, part of the London hospital I had my second surgery. Very nice. Doctor who spent ages with me. I was quite surprised that there are more options for me. He did describe my condition as 'very difficult', though.

Anyhow, on list for a lidocaine infusion. Never heard of that. Apparently only helps about 20%of people and then not for long. Next a course of three spinal injections in several spots. Never had much success yet, but who knows? Then he mentioned the possibility of a Spinal Cord Stimulator which Is an implant. Sounds quite invasive and scarey...

Started pain management group this morning so all in all I'm a busy girl!

Hope you are all ok.

Hi everyone.

matilda how did the pain management session go? Good to hear some new options might be available but at the stimulator! that does sound evasive. Have you done any research into it?

So many of you have had such horrible problems for so long, and I moan about a bit of back pain returning Things are slowly starting to decline here pain wise though . Pain has slowly been increasing, not helped I think by a period of absence from the gym for a week or so. I did body balance on tuesday, a little sore to start but thought I needed to ease into it. Except, I did a lunge, where normally I would step into the position in a couple of steps (if you don't know what a lunge is, best to google as I can't describe it well!) I sort of forgot to avoid it, and went to step right into it, full forward, outside my hand; except, as my leg was in the air, I felt something in my back 'go'. And then I was stuck. And, stupidly I carried on, albeit it slowly and avoiding many of the following tracks. Stupid. Stupid. I know how it goes, the pain is reasonable at the time but gets worse and worse.

Since then, leg pain has increased, both legs, stabbing pain, some cramping pain, and at work yesterday tight pins and needles in my foot (it went again, but first numb pins needles for a little while) and I can't move at all other than as a robot without my back literally giving way. Back pain is increased. I am refusing to take my meds, apart from napraxen, I don't want to be on them.

God knows what I have done! But, to be honest the pain was already increasing, this seems to have just sped it up. I am a bit worried about scarring (fibrosis?) how would I know as it can't be seen?

This is never actually going to go away permanently is it?

Oh. And. I spoke to neurosurgery appts. I was meant to have my 12 week follow up mid september, told it was going to be 6wks later than planned or thereabouts. Yesterday, was told there are another 100 people on the waiting list without appts before me, they are making appts 6wks in advance, so estimate another 2 months or so, after those 6wks. So, basically they cut my spine open, fuck about with it, see me for 5 mins afterwards, send me home and leave me to get on with it. Not impressed with it, but what can I do?

Sorry. Huge moan. Hope everyone's pain levels are reasonable today.

matilda I can't link to those shoes! I really really want a particular pair of boots, but can only get them online and they are a lot of money. I don't want to buy them only to find I can't wear them. They are Fly London, which seem relatively comfortable, those I have tried on in shops, but these are not as soft soled I don't think, the ones I want. I am going to work wearing smart shirt, trousers, make-up, hair done, pair of black trainers. Very classy. Not. I can't wear my dresses as my trainers don't really go

pavlov I'm trying again. They are Fly London!

www.office.co.uk/view/product/office_catalog/2,17/1471402472050

Also got

www.office.co.uk/view/product/office_catalog/2,30/4725991066050

Which I love, and...yes I did go mad...

www.johnlewis.com/myjohnlewis/order-details?orderNumber=38143481&year=2013

Total bummer that your pain is still so bad. If you have the exercise bug would you try aquacise for a bit to let things settle. I wish I could reduce meds. This morning felt okish so only took one gabapentin, naproxen and two cocodamol 8/30. I am now unable to get off my bed. Bleugh.

Hope the links work.

Sorry, don't know why Office won't allow this. They are called Yind Wedge Calf Boots. I find them v comfortable. I guess you could wear them round the house to test?

The others, also Office are Wulfrun Creeper. In the sale £95 down to £30! Also very comfy. Look nice with skinnies or shortish skirt and thick black tights.

The JL boots are for best. When I wear them I keep glancing down for a quick admire. I've been in sensible flats for so long I'd given up on nice shoes/boots.

Btw can't believe your hospital appts. I would email PALS and copy in the Chief Executive. You've had neuro surgery, have ongoing concerns and have no follow up. Unacceptable.

first link

[[
www.office.co.uk/view/product/office_catalog/2,30/4725991066050 SEcond link]]

I"m just being nosey :) My back problems (caused by fairly minor scoliosis) are not as bad as yours. Thankfully mine get sorted by an osteopath - I just need to rediscover my core muscles in order to keep everything in place once it's been put back!

Thanks soupdragon, how did you do that?

Sorry to hear about your back. As before this thread isn't just for severe problems. We don't have the monopoly on back pain, so please do join us. Have you tried Pilates? I swear by it.

soup welcome and thanks for sorting matilda's links! What does your osteo do to help? I saw an one at the beginning, who diagnosed disc problems and pretty much told me the best treatment was To Get a Grip. He wouldn't touch me other than to do a little acupuncture which didn't work. I have wondered if post surgery it might be worth revisiting one.

matilda love the fly ones!!! I will linky to the ones I want see what you think re comfort.

And yes to Pilates, body balance, yoga, etc for core muscles...

My osteo frees up the locked vertebrae in my lower back, as I understand it. The one I've chosen does it like a massage rather than the "tie you up in a knot and crack you out flat" type! It's actually very pleasant although within 24 hours I'm in pain and very grumpy - this wears off thankfully :) I can touch my toes after I've been. Must go back actually... I can barely touch my knees at the moment! My fault for trying to move a wardrobe.

It may be worth another visit, Pavlov. Explain on the phone and they might be able to say whether its worth a go. I'm "lucky" in that mine is not disk related.

I have tried Pilates and I know I need to do it but it I find it duller than a dull day in dullsville.

As for the links, I did the the old fashioned way by typing it with some text rather than automatically. I think the comma in the link messed it up.

:)

soup you should try body balance then! it's to music which I like its faster paced than yoga, less clinical than Pilates, and make sure it's in a class. I am not so great with my physio exercises or Pilates at home as I get bored, but in a class it's great, especially as I find it motivational to be around those who can do it as I try harder not to look unfit ;) unfortunately that is also my downfall.

matilda I have some water based exercises to do for physio. I am going to get a float like you suggested on tmy other thread, for between my legs, so I can keep moving.

Right. I am recognising the leg pain that is returning, but the other leg. I am getting a tight/numb feeling around my foot, that has eminated as shooting pain through my butt down my leg. So, although I know that the diazepam while probably not help the leg pain, I have nevertheless taken 2mg, so maybe I can sleep a bit.

Docs tomorrow to kick up a fuss. And yes to PALS etc. It's a joke.

here for the boots i like

or these

soup you need to try another instructor! Pilates is so not boring with the right person. I'm lucky in that my former instructor is a physio. Now I see her privately for an hour and she does half doing release massage which sounds a lot like your osteo. The we do half hour Pilates. I miss the classes but one to one is fab as it's totally measured to my abilities and problems. I'm still very strong in some respects. Wish I could have her a lot more often.

pavlov go for it, if you squeeze it tight your gluteus, abs and pelvic floor all get worked while you do front crawl. Apparently walking in water both forwards and back is good (but boring). Abs tight, push hard with back leg using glutes if that makes sense. Re the Pain Management group, um the jury's out on that. Not sure about spending the next seven weeks with a few of the group. I will do it though. Sounds pretty similar to the group you did but run by psychologists and physio.

I walked the dog with a friend this morning, sooo slowly. Then had drilling pain in my bottom and leg so spent another unproductive afternoon on my bed. So frustrating.

I have a lot of shooting pains, stinging, stabbing, but without numbness, oddly. So sciatica clearly, but no fuzzing, the odd pins and needles but not a huge amount and that comes and goes. But the pain is fucking annoying! It's not 8/10 in terms of level, it's more like 5 or 6 out of 10, but it's relentless, and it's from my back, deep within, right through butt into legs and feet. Walking doesn't help, in fact I seize up as I walk. It's similar, but not the same as previous pain, it's much more electric this time. And I have lost mobility in terms of moving sideways, I can't twist now, walking like a robot, as if I twist my back collapses. I have had that before, but at least this time it doesn't cause the cascade of pain and immovability that used to follow. I am finding that sleeping is painful but moving is a bit easier when I first get up in terms of shooting pain (just not the stiffness).

well the good times were good while they lasted eh?!

How are you all? Chirpier than me I hope

Oh, pavlov deep sympathy. It's crap, isn't it? Could you see your GP and explain what's going on? They may be able to speed up your ahem, post-op (rather a loose term when it's so long) appointment. Since getting to see the consultant is about as difficult as getting an audience with God could you persuade your GP to refer you for an MRI ( insist on dye contrast) so God your consultant actually has something to review? Or even pay for one...

On a jollier note I love the boots, both look comfy, slightly prefer the second ones but that's just me. I think the air filled heels are very cushioning. I ordered 3pairs of the black ankle boots yesterday ( bored!) and absolutely promise to return two.

Hope all back sufferers are surviving.