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 really relate to the talking too much! Full dose of codeine and gabapentin and I can chat for England .

Had a weird and embarrassing episode at The Pain Group today. Suffice to say I have been offered one to one psychologist from next week..better out than in? We'll see.

I genuinely will try to post something cheerful soon. Trouble is I think I have just had it with putting on a brave face.

Hey ho.

matilda oh what happened? Are you ok? It's ok to use this space as a place to vent, and if you are not feeling positive, please don't feel you can't share, I moan with the best of em, you ain't got nothing on me

That applies to everyone here too, we all have some pretty shit days, some even more shit than others, and one thing we can do well here is hand-hold, some of you lot have held me up through some tough patches and let me be so very negative without making me feel shit. If we can't share with out fellow back pain sufferers without understanding, god knows we can't share with others.

Talking of moaning - I am in soooooo much pain! Completely and utterly self inflicted, but for a good cause...I was on strike on a picket line. And you would never ever guess how much strain on your back carrying a wooden placard can be in the wind. 3 hours of standing, a little bit of sitting, some walking (too much coffee), followed by fire works at a friend's house and trying to manage the children while DH did the fireworks with the other men, I am sooooo sore.

High dose of codiene, not even high. I think it will be a very good time to crack out the diazepam as my muscles are very definitely unhappy. And I have to go to work tomorrow as on strike again in the morning then in for 1.5hrs. Even if I have to drag myself in.

But, way to go the Millitant Me! more like a middle class strike, more fairy cakes, less singing protest songs in the faces of police officers

pumpkin how did the GP go telephone appt go?

still here, sorry it's so shit for so many at present I hope your mri appt comes up soon Pavlov.
I'm currently struggling with work trying to remove my "reasonable adjustments"as they don't fit neatly into our new hot desk system. They sent me back to occ health, it seems hoping that occ health would back them and occ health have recommended extra measures and that I should have the same set up at home.Now apparently with a director to decide as they are worried about the implications across the organisation.Sod the equality act etc only in local government. could a neat office be more important than keeping disabled staff in work.

Matilda, I can't think of a better place than a pain management session to let the anger out.I often feel like kicking something (except it would hurt too much ). I try not to dwell on the future as it's too bloody scary I find these days a lot of my anger is coming out in sharply worded e mails about the bloody chair fiasco at work which are starting to make me look like the crazy lady

Matilda def better out than in....because holding stuff in can add to the tension in your body....sorry that sounds a bit hippy. Sometimes it's shite at the time getting all the emotional stuff out, but it's much better long term.
Gentle hugs and hot water bottles to everyone, am sore too atm for no reason I can think of apart from maybe the cold wet weather?

Sorry you are in a lot of pain peri.

My pain is reasonable, apart from a horrendous cough and sneezing due to a bug which is causing huge amounts of pain as I cough and sneeze. I am doing this 'aaaa choo-AWWWWW' each time

Hope everyone else is ok.

denial sorry also to hear about your shite public sector employer. It's illegal! the twats. Sorry but it makes me mad that some orgs think they can just not follow the letter of the law and protect their fucking hard working staff.

Hey folks, I'm about to go to bed. Just posting so that I can easily find you guys tomorrow.

Short story is that I have Scoliosis, had Harrington rod and spinal fusion in 1991. Rod is now broken and for the past year the pain I suffer has increased and never lets up.

Acupuncture has given me some respite in the past. I'm scared to go at the moment in case it doesn't work. I'm not ready to face that. Irrational I know.

I also have an appointment with a Scoliosis specialist this month. I think I was referred by Orthopedic Surgeon in March. Again, what if he tells me that this is it?

One of the worst things is that when I stand up, it takes a while to straighten. I am determined not to walk with a stoop but I just can't help it.

Ach well, like I said - I'm off to bed. Will check in tomorrow and properly read all of your posts.

Hi yama welcome
Sorry to hear your fusion has now messed up. Is that usual? Does it have an expected life span? Do you think they will want to replace it, or are you worried they might say they can't do anything else for it?

What things do you do to help ease the pain? Do you techniques that you use that work?

Morning all :)

Yama, that has been a long wait for you. I'm convinced that shorter waits would save the nhs money, back pain puts you into unnatural postures and that must increase the impact across your back, knees etc.

I seem to be paying for an active week over night / this morning. Youch! I don't seem to be able to break the cycle of using painkillers to manage things that I shouldn't be really doing and then ending up with a bit of a back crisis. But when I'm doing stuff, mentally I feel so good and its a balance between physical health and mental health.

Hi everyone, OMG, your rod has broken, yama? How awful! I do hope they can fix it. I guess that over the years the muscles and other tissues must grow around the rod so are all affected. Ouch.

Denial, your office saga just about sums up the attitude of the public sector. Utterly crap. How can it not be better to have you comfortable and productive? How???!! Have you gone to hr, union or whatever?

I've had a bit if a crap week pain wise ( I seem to say that quite often). I've no idea why but yesterday friend suggested it could be linked to my mini breakdown which I guess could be true. I start my therapy/ counselling on Tuesday so must tell her that so we go gently. I'm quite nervous which isn't at all like me. I'm afraid, I think of letting go of something which is too big to contain. I don't think I can keep it contained forever, though...I think I'm lucky to get offered this opportunity so easily. I know there are long waits if you go via the GP. I've also met this woman before and like her. She's a doctor/ psychologist so hopefully knows what she's about.

We had a big dinner last night for my dads 80th birthday. It was lovely and I did hardly any of the work. It's sad I can't even cook a big dinner. Well, I could but would suffer. I peeled spuds for about five minutes before I gave up. My two boys were stars with clearing up.

Am off to join my lovely friends now who are walking my dog (friends's partner secretly loves my dog!) and I will meet them for coffee and stroll in the gorgeous autumn sun. The colours are stunning.

Have a great day, comrades (pavlov the militant striker!!!!)

Thanks Pavlov and OYBBK. I got a lie in this morning and actually feel a lot better. Touchwood.

I don't know about lifespan of the rod. When I had my operation my Consultant would answer any questions with 'Refer to the pink booklet.' The pink booklet was a piece of A4 folded so was pretty useless. I do know that my operation was being phased out at the time (1991). My surgeon was close to retirement so stuck with the traditional op.

My guess is that 2 pregnancies have wreaked havoc and I'm paying for that now.

My fear is not so much that there is nothing that they can do, it's more that it's going to get worse and that there's nothing they can do. Does that make sense? I'm coping with the level of pain at the moment. Any increase could impact my ability to do my job, parent my dc etc.

Hi Matilda - my dh was reading something recently that said that the biggest cause of back pain was stress. I know myself that when I am on holiday from work my back is better. Obviously, we on this thread have an underlying back problem but stress is sure to make it worse.

hello to all of you

I am not in any way close with my back pain to what you are suffering but being putting off starting some exercise to strengthen core muscles for ages (I know this IS silly)
I work in the office, drive up to 2.5 hours every day commuting, i got a god - that at least forces me to walk!

I feel for you poster PavlovtheCat - standing around and in cold makes my back much worst, I now involuntarily am always wriggling, rocking moving as stiffness creeps on quickly if I stand still
I would never be able go to a concert or a wedding where there are only standing places. I wear hat on my dog walks already as I feel much better when I am warmer :)

Bumping for the horridestmother.

Sorry antimatter, you're going to have to do it! Those core muscles will thank you by supporting your lumber spine. Two hours commute sounds brutal. Can you get a few sessions with a physio? I bet a good one could come up with some ideas for you do do in the car even.

I love my dog, too but haven't promoted him to holy status yet!!! Good exercise though .

I went for third of 7 sessions of acupuncture and chinese massage I have started last week.
My Chinese doctor told me that the right side of my back is quite bad (I didn't know which side was worst :) ) and do I feel any improvement. I think I do but I will be looking to get physio end of Nov (I have private insurance through work).

But I can't compare myself to you guys as I actually managed first session of c25K last night - had sore back whilst running and my calfs were killing me but I thought after reading this thread that I really have to get seriously active as I feel not only my fitness getting worst lately but actually am beginning to be used to pain which is just bad if I can still do something about it.

Yoga did wonders for my flexibility and I need to find good teacher again.

I changed the way I hold driving wheel - when I am steady in 70 mph and no overtaking I am holding the bottom of it with both hands. I use to hold top all the time. Making this small adjustment made huge difference.

I also bough myself something of this shape
global.rakuten.com/en/store/nekoronta/item/psm-rp30m/

it eased neck discomfort
it is made out of memory sponge, I think I got it in Lidl about 3-4 months ago

global.rakuten.com/en/store/nekoronta/item/psm-rp30m/

core muscle work is def the key to helping stabilise dodgy backs.

Exciting pillow link antimatter!

The one that has helped my shoulder is: this one

Hi Have just found this thread - my story is scoliosis diagnosed aged 10/11, monitored regularly through my teens but the doctors at the time decided an op was too risky, so that was that. I've had constant back pain since then, until almost 6 years ago I went to stand up and couldn't walk so immediately made an appointment with an orthopedic specialist, and after x rays, MRI, physio etc for about 6 months, finally saw a neurosurgeon who said 'wow, this needs surgery'

I live abroad (Europe) and although we had insurance, they wouldn't cover pre-existing conditions, so although we had paid to see the surgeon privately, he put me on his NHS equivalent list, and operated a few months later. My spine is now fused from T10-L5 so I can't bend, twist at all, sitting, standing, walking are all extremely difficult, in fact being upright at all is very painful, I'm only comfortable when lying almost flat, so that's what I do most of the time. One leg is now shorter, so I have to have one shoe built-up, and can't wear anything with a heel (I had to throw out bags and bags of shoes!) and I can't walk on anything uneven like grass or sand, as my hips and pelvis are also fixed as a consequence of the op.

I don't take any medication, as my stomach is knackered from all the drugs I had in hospital, and as my condition is now permanent and never going to improve, I don't want to spend the next 30 or 40 years on tablets. I do have 'medicinal, muscle relaxant' wine most evenings, which my physio is very happy for me to do!!

Fortunately my husband is very supportive, and now does the majority of the housework, shopping etc - I can drive, but it's very painful so I only go locally and when I really have to. I work for myself from home, so lie almost flat with the laptop propped up on my knees - although I have just got an electric bed in the living room, so I can raise myself up a bit and stay supported - I also have a mobility scooter which I'm experimenting with, as it's a nuisance to always have to take the car for short distances

Anyway, I'm quite resigned to my situation now (it hits me sometimes but most of the time I'm ok), it is frustrating though as my situation is so unusual that people find it very difficult to understand

I have started baking a lot in the last couple of years, as it makes me stand up when I wouldn't choose to, and makes me feel I'm achieving something, some of the time!

PS, my op was necessary as the vertebrae had started pulling away from each other and my spine was unstable and ready to snap (in neurosurgeon's words) so he's not terribly interested in my pain, just points out that I'm not in a wheelchair, so I should be grateful for that!

Hi mabelene, wow! you have been through it. Glad you've found us. It's a safe place to moan. Impressive that you don't take meds. All I seem to do is increase mine.

anti, loving the link!!! 'of course licking the baby is safe'!!!! Hahaha, I love funny translations. The pillow looks pretty hardcore. Fortunately my neck is fine.

I had my first counselling session today. It was fine. Basically a planning meeting. Next time will get tough as I will be going over everything that happened. We've scheduled several more appointments over the next few months. I'm a bit like Mabelene, I'm ok mostly but then it hits me. Apparently I'm very good at distraction and displacement activity. The strength of my antipathy to one particular key figure is quite shocking, though.

Thinking of you all. Especially those struggling with work. I finally sent off my ill health retirement forms today. It's taken me months, denial again, I guess. Shall we take bets on how long it will be until they refuse?

I see we're about the same age Matilda, I don't have any kids, just lots of animals I can no longer swim, but I do pilates exercises in the pool when it's warm enough (won't be in again now till about April) and I am lucky enough to live somewhere where it's normal to have our own pool. I use ice packs when I've overdone it, heat just causes my back to spasm even more

Good luck with the therapy, and the medical retirement

my pillow is all soft made out of memory foam - no wood inside!

this one in the link is real hardcore!
but the translation is funny!

Mabelene - big hug to you (as long as it doesn't hurt )

It's funny you should say that anti but we do lots of hugging and kissing to greet people here, and as I can't bend even a little bit, it can be quite awkward - I feel it looks like I'm waiting to be treated like the queen!