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The Back Story

(1000 Posts)
Matildathecat Thu 03-Oct-13 16:02:03

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)

Matildathecat Mon 14-Oct-13 10:26:34

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.

PavlovtheCat Mon 14-Oct-13 20:58:15

matilda i love that, buying three grin Will you return them wink

I think I prefer the second pair. I actually prefer the style of the first pair, but, the second are probably more practical for walking comfortably in, and I do need to think about that now!

I had a reasonable night last night, thanks to succumbing to high dose of codiene (after it wired me for a couple of hours first) and double dose of naproxen (2 x 250mg, missed lunch dose to do it, gp had said to try that when sleep is bad). But struggled at work today.

And then! Some fucking twat (excuse my poor language) beeped me and revved his engine as I casually walked without a care in the world across a pedestrian crossing holding up the traffic. how fucking selfish of me, just taking my sweet time and not letting him go for another 10 seconds. Except you tosser, I was walking slowly and gingerly as every step I took really fucking hurt! It's times like that where I wish I had my crutch, like a badge to say 'i do have a fucking disability you know'. When I have my crutch, although for some reason I sometimes get spoken to Veery Slooowly, I do at least largely get some patience crossing the road, and people will wave me across the road more. Grrr.

I was almost in tears by the time I got home due to a) pain b) that tosser and c) the daily grind of managing it all getting me down. I hate walking slowly and looking silly, the looks of sympathy from some work colleagues and the look of 'yeah right' from others, so I am trying really hard to act like nothing is wrong, and just get on with it, but that pretence all day, it's really hard work!

And it's only monday! Would I be really bad if I just said sod it all and had a duvet day tomorrow? grin I have to go in late to see the GP anyway as I tried this morning 30 times to get through and was engaged the whole time, so couldn't go today.

How are you all doing? How do you cope with ignorant tossers who make out like you are a pain, in the way, stupid etc? I need some good quips that are more powerful than the middle finger (not sure there is any, that certainly has it's place grin)

Matildathecat Tue 15-Oct-13 15:06:38

Yep, it's crap, isn't it? Nearly as bad as pity...

I use a stick so guess it's more obvious but some people just aren't very nice which is sad for them( my thoughts on a charitable day). I dread 'you don't look very disabled' when I park in a disabled bay. I do have a response lined up but will probably cry.

Have received two pairs of boots so far I think I have a favourite but who knows what will happen!! Must stop buying boots.

Been to Pain Group this morning. Very well meaning but haven't really learned anything yet. It's three hours in chairs so although I can stand against the wall it's long

Nobody was able to answer my question, how do I reconcile the fact that I liked my old life a lot better than my new one? There is no answer, I guess.

Hope everyone is having an ok day. Am going to watch nephew in his GCSE drama tonight. Wish me luck. Think I will have to sit.

PavlovtheCat Tue 15-Oct-13 20:11:35

Oh no more sitting for you! Hope it isn't too painful for you, and a good show.

Went to work. But also went to see gp. He is kicking some ass with referrals to pain clinic and neuro. He is cross on my behalf. He has given me some pregabalin, v Low dose and recommends I give it another try. Been on it before side effects were horrendous. Really not sure. He has also told me to not do exercise for a while. At all. Taken some steps back but not sure why/if this is something or nothing. He told me to not let this affect my mood...hmmm he means well!

That accepting your new life thing? Not sure I will ever come to terms with that myself. I want to be how I was!

mouldyironingboard Wed 16-Oct-13 19:02:17

I'm late coming to this thread but want to say hello to fellow back sufferers.

I've got ankylosing spondylitis (a type of rheumatoid arthritis that affects the spine) and disc prolapse at L4/5 and S1 which have .caused chronic sciatica since 2010. I can honestly say that the sciatica is far, far worse than the arthritis as it is more painful. I can't have surgery because of the AS and can't have any kind of manipulation (osteo, chiro or any type of massage) because of the risk of fractures.

Two weeks ago I had a caudal epidural and a nerve root block under sedation and it seems to have helped a bit. My foot is less numb and walking seems easier than before.

The surgeon had written 'L4/5'onto my back before carrying out the injections. That night at bedtime my lovely DH was helping me into my pyjamas because the sedation hadn't worn off completely. He wasn't wearing his glasses and thought the '5' was an 's' and said 'why have you got 'ass' written there?' smile

PavlovtheCat Wed 16-Oct-13 20:14:06

grin at 'ass' on your lower back, bet that confused him grin

welcome btw, you are absolutely not late to the thread. I am sure (and hope) that matildas great idea for getting all us back pain sufferers into one place will slowly bring everyone together, there are a good few of us (and some amazing people who have lots of knowledge and experience as well as handholding --how very mn--) and we all from time to time have questions, moans, successes that we share on our own threads so it's a great idea to have our own space!

Good luck with the caudal injection working. I had this early on in my treatment process and it did work, pretty well in fact, just not for very long (couple of weeks sad) but I have heard it being successful for longer periods. I am hoping to talk to the pain clinic about the more localised injections that are on the site of the nerve, can't recall the name of it, but more direct than the caudal injection.

Does the AS affect all of your spine? or just lower spine?

<waves hello>
I had facet joint and SI joint injections in the summer. They were super splendid til they wore off. Pain nurse is checking t see if I'm suitable for denervation. It sounds a bit scary confused but if it could help I'm up for it.
Any experiences?

mouldyironingboard Wed 16-Oct-13 21:39:10

The AS mainly affects my lumber region and sacral joints. It has also started to affect my knees but the anti arthritis meds seem to be working. If only they had the equivalent medicine for sciatica treatment!

Are the injections you mention a nerve root block? I had one at L4/5 at the same time as the caudal epidural. If the injection hits the right place it definitely helps. I've had 2 done previously the first one (in 2010) helped a lot whereas the second (in 2011) didn't.

I agree with the idea of no exercise when pain is at it's worst. You really do have to rest and avoid aggravating the discs, which is easier said than done.

They were steroid injections. I'm a bit hazy about the next possible option - radiotherapy denervation??

Hello ladies, I have psoriatic arthritis, pretty much under control except for my bloody back which is awful at the moment. Main issue at moment is SI joints evil feckin things.

SI joints are a bastard aren't they.

I can't believe that 2 years ago I hadn't even heard of them! They don't even move (that) much ffs. I've got painful joints all over but nothing stops me in my tracks like the feckin SI joints. I've always had upper back pain but used to nod in sympathy at people with lower back pain and now I've joined the gang. I'm also very against any injections into spine after having dural tap from epidural for DC1. Nobody is ever getting anywhere near my back with a needle ever again so its tablets or nothing for me.

mouldyironingboard Thu 17-Oct-13 09:56:18

That deep achy sharp pain from SI joints is awful, especially when combined with sciatica <waves at kitten and denial>

One tip I can give is to visit a podiatrist and check whether your posture or gait can be corrected. My back pain was making me walk flat footed with my feet rolling inwards and insoles have helped to correct this. Because I'm walking with better posture the SI joints don't hurt as much when I move around. I've also found sitting on a wedge cushion helps rather than a completely flat chair.

Do any of you drive with adapted cars? I'm not driving at the moment because I don't have enough strength in my right leg and foot. Why don't more cars have seats with proper lumbar support? Even when cars have lumbar support in the seat, it's usually only on the driver's side. I use a mobility scooter and walking sticks to get around but driving would give me far more independence.

PavlovtheCat Thu 17-Oct-13 11:30:40

mouldy I am struggling to drive at the moment. I can do it but it hurts a lot. I wonder how much of my pain my be made worse due to posture and shoes etc. as when I wear my trainers which I have added inserts in, I can walk more comfortably. I do know a podiatrist actually, but not very well, I might tentatively ask her for some advice about whether I would benefit. And yes, I think it is the nerve root blocks I am talking about. I have reservations due to so many people telling about how it has gone wrong and such horrible outcomes as a result. But, I have had spinal surgery so thinking maybe I should consider it.

I also marvel at my understanding of terminology that I never knew about before, and how our spinal anatomy works! I am the font of all wisdom at work now and so many people ask me for advice and I come out with all these intelligent sounding theories and words wink

Very interested in 'denervation' denial <waves> I am going to google it now!

I am going to ask my gp for acupuncture again. I have made the decision not to take the pregabalin for now. I just can't face the side effects. I can feel things returning to how they have been already, with my reduced ability to help at home once again and the impact that is having on our family life. I am very worried that I will lose my job as a result of this.

For those who have had to give up work, how did you manage the transition, from income to no/minimal income? Do any of you work from home? How about mentally coping with losing a career? I am starting to make financial preps for it, cutting down on things I have enjoyed like my hair being done occasionally, reducing use of gas/electricity, getting rid of contact lenses etc, as my employer changes in April from government to private and I will likely lose my very reasonable sick leave entitlement and good support from my employer and I won't cope without that. I just feel like quitting now as it's so hard to work in pain.

hello to everyone! Where's matilda ? hope you are feeling ok after your epic day of sitting!

Matildathecat Thu 17-Oct-13 15:47:02

Here I am! Welcome to our thread, everyone. Lots of interesting points have been brought up.

My experience of injections hasn't been very successful but I have had some good tips from the professionals. Firstly, get them done in a place where they are gone under CT guidance. They can actually see the needle entering the nerve root. Secondly, two radiologists said that they recommend doing the injections as a set of three at monthly intervals. I mentioned this at my Pain Clinic appt last week and the consultant agreed this could work better and will do this. He's also planning to inject several spots at once. Sadly my adhesions/ scarring around the nerves seems to impede the impact of the injections. It's interesting that nobody here seems to have relief for long.

denial, I don't blame you for feeling wary but would recommend speaking to an anaesthetist about the injections. I used to be a midwife and epidurals in labour are very, very different. Especially if done under CT.

pavlov, yes! losing your career is devastating. Not just the loss of income but loss of identity, self and achievement. I am trying to carve out a new life but it's hard. Very luckily we can afford for me to not work but, combined with pension loss etc it's a huge drop. (I wasn't even a high earner. I just loved my job). I was advised do not resign. However much it hurts to be dismissed you are better placed for claiming any benefit, early retirement etc.

I'm in the process of applying for ill health retirement (nhs), any tips? Also, I got ESA contribution based for a year and am now advised to go for Support Group ESA. Any advice very gratefully received.

Finally, shoe update!!smile I am keeping one pair of ankle boots! Fly London from Office online. Laces up the back. So happy to find heels that feel like flats.grin.

PavlovtheCat Thu 17-Oct-13 18:03:08

matilda I see what you are saying about not resigning. I won't resign. But I hate feeling so useless and think it would be better for my sanity to just not work there and feel so utterly useless. I know my colleagues don't view me with much sympathy, more that I am a pain in the ass that causes them headaches when I am there due to pain slowing me and making me forgetful and when I am not there as my work has to be covered. I just want to be at home right now, just pacing myself and using the little energy I have right this second with my children, for my children, they get the worst of me.

I feel that things are on the downward spiral. I cannot put my finger on it, but something feels wrong. really wrong. this is not recovery pain. not getting fit pain. not pulling a muscle pain. I c

I cannot believe I have just had major surgery and it might not have worked. Well, that's not true, it has worked, but I don't know what's going on now.

Anyway. Top coping tips - Who has some good ones? Also, what heat/ice pads/belts do you use? I have a microwave heat belt but it's not a velcro one, so it doesn't fasten and I could do with one that does both heat/ice (maybe with inserts so I can alternate within the hour) and that fastens so I can use it at work. Any recommendations would be goo

mouldyironingboard Thu 17-Oct-13 18:29:07

I had to give up my job but luckily I've been able to continue working a few hours a week from home. I earn much less but it is better than nothing and I enjoy it even though it is only a few hours a week.

Matilda is spot on about not resigning. It's horrible to think about but let them dismiss you once you have exhausted all sick pay options. Pavlov, is it possible for you to reduce your hours or to work from home at all? If not, then start to think about the skills you have and whether working from home would ever be an option.

Matilda, to claim ESA it's a good idea to speak to your doctor, consultant and/or other HCPs to get as much evidence together as possible. I'm not sure about the NHS ill health retirement but I would imagine you need to list all the things that you can't manage that are considered to be part of your job. It's better to give too much information (especially if your doctors can confirm everything you say) rather than leave any uncertainty that you could keep working in any way.

PavlovtheCat Thu 17-Oct-13 19:07:39

Thanks mouldy, I know you are right, and matilda, to wait until they fire me once there is no other route. I just feel awful doing that knowing I am not up for the job now. Pride I guess. I have considered reducing my hours, that is possible under disability grounds, I was considering doing it temporarily, just to give me some time to get back on track, but, DH has lost his job and although we can manage financially if I did that just I think I have to work 24 hours to get WTC. It's not a huge amount, but if I lost a few hours a week, plus WTC on top of that, it's just too much for me to feel comfortable about. But, I think I might have to consider it if things don't improve, even if only for a few months.

I do have a potential self employed job I can do from home. I think I can make it work enough to get a reasonable income from home, but, I need to be out of work to test that theory as it will take some work to build up, can't do that right now! But, yes, bide my time. I really do need a break though, holding out for a couple of days annual leave at half term but not sure I can make it that far!

matilda I don't know anything at all about medical retirement, or ESA for physical conditions, I only know how it works for drug/alcohol addiction and mental health conditions (thanks to my job) sorry!

Sorry all, it's too mememe sad

pavlov you are still public sector DO NOT consider resigning. sorry to shout but it is not your fault that this has happened and you do not have to give up the only safety belt that your family has at the moment (sick pay and benefits) because you are being made to feel guilty about a genuine disability. Do your best each day and try and ignore the looks, glances etc of colleagues. You did not do this. This is not your fault.

Matilda thanks for reassurance on injectionsgrin

PavlovtheCat Thu 17-Oct-13 19:28:28

so, what therapies work? Who has tried acupuncture? bowen therapy? I have heard fab things about Alexander technique but struggling to find a local therapist with reputation that I trust enough to pay for. Anyone tried it? And, how about that thingy that realigns the film over our muscles? I can't for the life of me remember what it's called....(expect you to have no clue what I am talking about!). How about chinese herbal medicines, anyone tried anything like that, anything homeopathic, alternatives to usual clinical medicine/alongside?

no idea.
I'm going to talk to my physio abut acupuncture I think as she does it, but shes private and expensive. Pain nurse suggested one-one pilates, but I do have really good core stability.
Wine helps while i'm drinking it. Baths help while i'm in them. Perhaps we should try starting each morning with a glass of wine in the bath?

You can ask to have your injections done under sedation. it's what my pain consultant does as a matter of course. It was brilliant. Way better than a GA for me. Lay on my tummy, breathed in some gas while they popped a cannula in, then I woke up pain free and ready for a cup of tea.
of course one the local had worn off I felt like id been kicked in the back for a few days until the steroids kicked in.

Matildathecat Thu 17-Oct-13 20:12:56

My pain management course includes a session with an Alexander technique teacher in the group. Then, I believe we can have eight one to one sessions with her so I will def do this. I already do loads of Pilates so I'm thinking there will be similarities.

I like heat on my back not ice. Physios and consultants happy with that. Haven't found any acupuncture etc that helps. My physio does a great release massage but the effects don't last long. Sorry, but for me it's drugs that help. And lying down like a great lazy lump.

Have had to give up eating on account of weight creeping on which I hate.

pavlov, do you have Occ Health at work? If so have you seen them? They can recommend adjustments to your working hours, work place etc. it's probably a good idea because if you do get fired (sorry) then it puts you in the best possible light. It actually sounds as if you should be off sick now. It's unfortunate but there you are. I was off continuously from Feb to December. I had to attend regular HR reviews which became more and more formal. I was eventually fired in January. In the end it was dreadful, but a kind of relief it was over. They refused my request for unpaid leave to have and recover from my second op. Truth is, employers don't like bad backs or mental health. Now my registration is going to lapse soon so even if a miracle happens I won't be a midwife again.

Anyway, have decided that if tomorrow is a good day I am going to try to go to the cinema on my own. First time since January 2012 and I love films. Wish me luck...

Matildathecat Thu 17-Oct-13 20:14:37

badkitten, what a fab idea! Best I've heard, anyway.

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