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)

Pavlov the planning skills have taken years to get to grips with. It must be about 12 years since I did Pain Management. What's probably made me ( most of the time ) pace myself these days, is the fact that I am a grumpy fuck and have no patience with my daughter if I'm tired and in pain. She's great at understanding that I hurt, but I don't want to inflict any unnecessary shite on her.
Ouch at the roller disco.......hoe your GP sorts out your appointment soon. And be gentle with youself in the meantime.

I've always dreamed of a room with zero gravity that I could just float about in....and a shop that sells new backs

That's why I just got on with the rollerdisco with DD, she is only 7 and has already put up with my shit being put on her, as has DS who is 3, almost 4. She got a bit upset today that I probably won't be able to rollerskate with her, and also that I might not be able to run with her (she has been waiting for me to go running with her), so I need to show her that I can do some things, and that I have made huge improvements since this time last year.

Oh, a zero gravity room! followed by a jacuzzi cinema trip.

Well, it's clear there's a gap in the market jacuzzi-cinema -wise. Anyone got a few million to invest? I don't want to share with any strangers, mind you. Or would we still be sitting in watery rows?

Sorry that even taking your dd out has caused such a flare up pavlov.

Hi perihelion, nice to meet you. Sounds like you're a true pro in the game of backs. What happened?

I've woken to a strange mood. I keep thinking, '< what really? Forever?>' it's like it hits me all over again sometimes and I haven't really processed the information at all. Sorry. Will now snap out of self pity party.

I'm going to meet friends who have as usual very kindly taken Bertz the dog out. I meet them for coffee and a stroll after they've had a good old walk. Lovely Richmond Park if anyone knows it.

Thank god for friends and family, though not for silly DH who has gone off to golf with my stick in his car.

Have a nice gentle, pacing kind of day, everyone.

Loving the idea of a jacuzzi cinema!

I know a few people who have inversion tables and swear by them. I guess it depends on what precisely your problem is but using gravity to create space inbetween the vertebrae makes sense. Although when I was 19 I had traction for 3 weeks in hospital and it didn't help at all. Just weakened all my muscles ( and weirdly made my hair grow a few inches due to the increased blood flow to my head- every cloud has a silver lining I guess!)

The thing I think I find hardest about this condition is that it's an invisible disability. I look absolutely fine on the outside but people can't see the pain I'm feeling inside and as a result I've suffered a lot of insensitive or cruel comments from people who don't understand why I can't or don't want to do certain things. It's something I have to think about every day and has definitely limited my life ( holidays, festivals etc)

This week I am going to do back care pilates. I do think exercise is one way of managing/ strengthening the condition. I hope because its specifically about helping back problems it will make it better not worse.. Watch this space!

Just found you lot, sad there's so many, but glad for the company.

My story is..

Aged 24 I woke up unable to move and in agonising pain, no known injury, hadn't overdone it the day before, so totally unexpected.

Since then I've had blood tests, x-rays, MRI, physios, etc. And they have no idea what it is.

All we do know is that my upper spine - between my shoulder blades - locks up and wont move and is horrifically painful. The pain/stiffness spreads down my spine, up my neck and across my shoulders (I get a bump on the back of my neck when it's bad). About a year ago I started getting similar pain in both wrists, which they assumed was carpal tunnel, but turns out not to be.

It's frustrating not having a diagnosis, and I don't get any additional help because I'm not considered disabled enough, despite being unable to work.

Also find that because of the back pain being bad enough to leave me bed bound quite often I just pile on weight and then get stuck having to try and convince specialists that the back pain isn't caused by the weight (I was a size 10 when it started). So lots of "if you just lost weight your back would get better".

Like you Matilda I still have days where I wake and it hits me all over again that this is my life from now on, hard watching DS as he becomes a toddler and know that I can't run around like the other mums. :(

Forgot to say, am nearly 30, so feel like it's robbed me of my 20's. :(

Oh and I'm pregnant again, with SPD again. My body hates me.

Murder, that is a very difficult thing to deal with, so frustrating to not get a proper diagnosis as well. It sounds like you are stuck between a rock and a hard place with not being able to work but the powers that be telling you that you are. I have no answers, I've tried so many treatments over the years in the hope that something will work ( and none of them were NHS. They are rubbish when it comes to treating backs !).

to you. X

Very hard Murder :( the working thing is especially hard. It's a very difficult position to be in. Nightmare with a toddler. You've come to the rot thread.

I seem to have acutely set off my back today. Keep getting nearly stuck. Can't decide between seeing my osteo of long term who is pretty good at these acute phases and can usually fit me in within a day or teo or trying to see if my physio whom I've been seeing post injections can fit me in (she does 2 or 3 evenings a week in her private clinic) I've not seen her while I've been in this state before. Both cost the same amount.

What do you think?

I think if I were you I'd try and see the physio, just so that she can see you while it's that bad.

ok, will do :) will give her a call tomorrow. It helps that she was recommended by my pain consultant.

My physio always helps with her release massage. I try to schedule appts with her after any events that I know will wreck me.

Hope it helps.

murder, hi, your situation sounds very hard. I hope you have good support. So relieved my boys are older.

None of the physios I haves seen have ever given me massage not even the private one recently. It's probably all I need to get me back on track too

Hello Matilda and everyone else.

Matilda, I had a riding accident while working with horses about 14 years ago. Prolapsed a lumber disc and ripped my left sacroiliac ligaments. Had glucose injections ( prolotherapy ) to try to help repair the ligaments and refused a joint fusion op as the procedure was too new, not likely to help the pain and the consultant didn't want me to ever be pregnant if he went ahead.
First 2 years was hell. I lost my job and my identity. I was used to being outside, being very physical and often riding for up to 4 hours a day. And when I hadn't been working, I loved to go out dancing.....From that to shuffling about and crying at the pain of trying to get up a flight of stairs was sooo shite.
Pain management helped enourmously, as I used to sabotage myself by getting cross at the pain and carrying on, just to prove that the pain wasn't going to stop me doing what I wanted, when I wanted. Which just put my rehabilitation back. The course also helped in a weird way, because I observed a couple of people on the course who were so negative about the course and didn't want to even try the slow build up of exercises/hydrotherary, and I didn't want to end up like them. Since then, I've kept moving. V gently at first, persuaded a yoga teacher to let me join her pensioner group, walking and swimmimg. I also flirt with cycling, cross trainers and physios! For me my stomach and my bum muscles are essential to keep everything together. And not sitting for too long.

What I've found to help along with the drugs and exercise are my trusty hot water bottle, TENS machine, physio, sports massage and sensible shoes.( And laughing )

What's not helped is a chiropractor, cannabis, reiki, and twats at parties offering to give me a massage.

Not tried inversion therapy, but google The Alexander technique's semi supine position, which gives the spine a gentl lenghten. Or lie on your back, with your kness bent at 90 degrees and lower legs resting on a chair seat.

peri I think we have spoken before haven't we? I remember your story. How horrible for you. Have you managed to return to work? I shall take a look at the semi-supine position, thank you!

I have called in sick. I have been a coward and called the 'sick line' but emailed my boss, not called him. I always feel like he sounds so disapproving over the phone, questioning my legitimacy. And, I don't know, maybe I can go in. I don't hurt half as much as I thought I would be after Saturday! But, I just don't want to work and be in pain. Not today. I have had such a good run, I thought I had made such huge progress and only had one sick day since returning following surgery, even though I have had ups and downs which have made working hard. Mostly, I have got back up running (not literally!). But the last couple of weeks has been so hard. I have done my job, and I think quite well, but it has taken all of me and the family are left with the quivering in pain wreck left once i get home, and on my days off I just want to rest. DH said I need to use my annual leave better to get more break, but, I have limited leave left as some of it has been used to look after sick children since April, and other reasons not related to giving me some me time (as it usual with children, I don't begrudge that).

I really think I need to consider reducing my hours, for a little bit of time to get back on track.

As I have some time, I shall read through some of the posts from yesterday and respond!

murder oh no, how frustrating and upsetting for you to not have a proper diagnosis, and to have your weight being blamed for your problems. Surely it's a no-brainer - back pain = unable to exercise = putting on weight, and that's even before any form of comfort eating.

DH has got a new job!!! WOOHOO! it means, that I might actually be able to change my hours around without reducing them. His hours have been so haphazard that my working hours could only be as they were, but, we have been talking about me working every day, but shorter days. It means I will not get a whole day with DS on my own, but it will mean finishing at around 1-2pm every day, I get every day to collect them from school, some time to do physio more regularly, have some organisation and if I am in a lot of pain, to just come home and lie down for an hour before the kids get home. I feel so bad doing that when I get in at 6pm or later, so I don't do it, but really really need to. Then the children, and my DH will get better quality time with me.

I won't get excited as I have not put in my request yet for changing my hours.

I am going to go down the disability route to adjust my hours, rather than flexible working as a parent, as although these changes will positively impact on the childcare, the benefits for me are largely relating to my disability - how do I apply for that, does anyone know - is there a form? Do I have to go through OH/my GP? I might start an employment thread for someone to give me some guidance.

pavlov, great news! I really hope this will mean you can adjust your hours. How many hours do you work? I'm just wondering if there's any way you could have a rest day midweek. I think you have a good case for the disability route. You have a serious, long term condition. You've had major surgery and tried so hard to rehabilitate so surely they should be pleased that you are looking for practical alternatives. Do you belong to a union? Or contact OH? Maybe a letter from your GP? I would suggest your consultant but that would be ridiculous. And way too much to hope for from the god of surgery maybe difficult to achieve. Good luck anyway and well done for taking today off.

peri, great to meet. Your story is uncannily like mine in some respects. It's hard to think of the rest of my life like this but, like you, I am determined to make the best of it. Are you working? I am finding my Pain Management course quite difficult. Like your experience I think there are some there who aren't really looking to change. Also a couple who really should be at mental health groups. I wonder if their gps referred them just to get rid of them. Honestly, one of the women is quite unsettling.

I feel like I actually know most of the course already. I have read a lot about pacing, avoiding flare ups etc. it's just sooo boring to apply to life every day. I love your list of things that help, especially laughing. I'm just not into TENs but would add alcohol!

murder, gaining weight is a massive thing to me. I lost quite a lot several years ago and kept it off. Over this last year it's been creeping on gradually. I was watching the scales going up feeling really helpless. Three weeks ago I joined Weight Watchers for the first time ever and it's working! I've lost 5lb so far. I don't need to lose a lot but it's a very personal thig, I think. Everyone there is really supportive.

scarlt hi! good luck with the Pilates. I do my back are exercises every morning religiously. Hope it helps. I would say that if you're new to it(?) go very gently and don't do too much. I have had flares after some sessions with my instructor and because we are so structured we can usually work out what caused it and avoid in future.

Anyway, been swimming and now if I don't buy food we will be having a pretty lean dinner.

I am terrible with my exercises. I don't do them as much as I should as they hurt, except when I am at the gym (that makes me sound like I am some buff fitness freak i wish!) and I find it hard to find the time, I know, I know that's shite and I have to make time, but life seems so chaotic and it's a vicious circle of too tired, too much pain, and before I know it I have stopped.

I am also incredibly impatient, and I bury my head in the sand. I have been far too much like 'right, surgery done, going to the gym, back at work, why is this not fixed now?' and then floored as it's not gone to plan. I am reading a theme from so many of you here, which is it has to be done slowly. I am just struggling so much with that!

weight has been the opposite problem for me - I lost too much weight as I was not exercising I was not hungry, codiene clogged me up, nerve blockers suppressed my appetite and I sometimes forgot to eat when DH was at work in the evenings and I stopped drinking wine and the weight fell off me. I went from being just over 9st to just over 7st (5ft 3). I hadn't weighed myself until I had lost all the weight and 'ignored' it, although people kept telling me I had lost so much weight, i pretended I hadn't lost so much, although my jeans were hanging off me.Even my female boss at the time said she thought I had lost too much weight and to eat more! I remember when I was in the gym with my friend at the time I weighed myself I felt a little sick when I saw my weight, and my friend was at my skinny legs. I am putting it back on now though, at a rate and think, with the amount of chocolate I am now eating I will surpass my original weight .

matilda I work 25 hours a week (officially, but often around 27-28) - currently 9-5pm mon-wed and 10-12:30pm on fridays. but, I sometimes struggle to get in for 9am, so on those days I finish later (flexi is fab!), and on fridays I don't always get away at 12:30pm (sometimes on the other days I don't leave until 6pm) due to nature of my job I can't just leave if I need to make certain calls or do risk assessments. It's very much a sit down job and so shorter days would be better as I will move around more. I try to walk around every 30 mins, but it's really not practical 1)if I am in a meeting or with a client, 2)when i am doing a risk assessment and have to concentrate, losing flow of thought every 30 mins means it will take me up to an hour more to do it! And I don't get time adjustments for stuff like moving around every 30 mins. I would love a recovery day AND the additional time each day but I don't see how that will happen without me cutting my hours by a whole day - DH will work most weekends so I won't get a recovery day then either!

to puddle I am so pleased that the ABs have helped. Have you explored surgical options or are you happy enough with your pain levels to give them a wide berth?! Are you still going to have the injections or are you going to wait and see how things carry on as they are?

I have spoke to my line manager, tentatively brought up the subject of changing how I manage my hours. He has said we can discuss it and I said that I will email him my proposal and see what he thinks of it. I told him I can't carry on as I am.

I am off for the rest of the week. I feel better than I have, I think some down time was what I really needed. I feel like I need a swim, I need to get stretched a little, so I might go and do just 4 lengths then hop into the jacuzzi for 20 mins.

Who was it that said about the guy at the hospital saying not to go to the gym after an injection? - my boss said to me on the phone 'take it steady, and don't do anything to exacerbate it'! It made me think of that comment what did he think I was going to be doing, going for a run? do some body pump ?

"Surely it's a no-brainer - back pain = unable to exercise = putting on weight"

You'd think so right?

I'm missing being able to take anti-inflammatories right now, they were the only thing that took the edge off, and are obviously not recommended during pregnancy.

Pavlov Yes I think so, but I've probably namechanged.
Matilda, Didn't want to be too rude about some of the folk at pain management, but it seemed that because they were getting disability and/or motorbility, they were unwilling to improve, in case they lost any benefits. Understandable in some ways, statistics back then, showed the chances of working again after 2 years off through back pain, were tiny. Personally, I've not worked full time since and pick my jobs on the basis of not having to sit or lift. Def couldn't do a desk based job.

Don't want to give anyone false hope, but I'm much more moblie and fitter than I thought was possible, but it's been a long haul and built up slowly.......getting that loud and clear Pavlov?

Murder, what a hard situation. Have you ever been offered hydrotherary or are able to access it through a charity like Backcare? That's the first exercise I was really able to do, post accident.

Random thoughts of other things that have helped......having very low standards when it comes to housework, never ever lifting or carrying heavy things ( have become fab at getting people in shops to carry stuff to my car ), rarely carrying DD once she could walk, I always had a packet of smarties in my pocket and taught her recall like a dog . Very expensive mattress and an intricate arrangement of pillows for my legs and arms. A car seat that can be adjusted so that my knees are level or lower than my hips........oh and an understanding DH.

I have a really, really important appointment with a specialist tomorrow. It's a long drive from home so am dreading the whole thing.

Please wish me luck. A lot of stuff depends on this.