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)

goodness this is my poang chair. It's not anything special, but is actually super comfy, there is a foot stall that goes with it, which I have. The design I have is similar to, but not the same as this, not that it makes any difference to its comfort whatsoever!

Ok, so a link would be really helpful...

here

pavlov that is interesting because I have been thinking about getting a new chair. But thought i would not be able to afford anything. I only have 2 sofas very squishy and no back support. Is the poang quite soft, I find a hard chair presses my weight on my bad leg, although I know a firm chair is best for your back.

I can't sit on firm chairs live. It's soft, but not sinking into it and can't get up soft. It has a little spring as you get in and out, very minor but enough to help I don't know if it's a 'good back chair' but I have the least amount of pain in it than in any of the chairs or sofas in the house and it's actually more comfortable than my 'fancy back chair' at work. The footstall that comes with it is at the same height as the seat of the chair and so it's a perfect angle to rest legs without feeling they are perched too high or low. You can buy additional headrests. Ours came with one small one but it got lost a long time ago. We have had it years and don't actually have any room for it, especially when our bookcase goes up never but I can't bear to get rid of it. The link I did was £99 or something like that, but that's just for that particular one. We didn't pay anything like that (although years ago), and I think there are ones for £50-60 in the Ikea site. But. I am biased as I do love a bit of Ikea

I like the fact that it is slightly curved almost like the shape of the back, so although sat reclined, it encourages a good spinal position, not hunched, and not perched straight. I have just seen a rocking version of it no, I have no space. I have no space. I have no space.

Although, I say there are cheaper ones, just had another look to see how much cheaper, and the cushion/padding on the cheaper ones looks thinner. You want the ones that are sort of squared at the edges, as they are thick foam padding. Completely washable covers (unless you get leather), ours has been washed lots and still looks good.

However, the one I linked to, I just changed the base to black on the website and with that cover it's lovely!! (it's the same pattern as ours, but ours is all one colour in a soft fern green/grey on off white background instead of the brighter colours). Oh. I might need an upgrade soon...

They do look really nice and the price is great. I don't really have room for another chair either as my living room is quite small, but as dd likes to stretch out on one sofa and dh and the spoiled rotten dog sit on the other one I do sort of need another chair anyway not just for my back.

well, there you go, they look fab too. I have had it around 8 years and it's still not dated. It fits with most style of decor I think. And, it will be All Yours!

We have a small sofa which it not hugely comfy to lay on due to shortness, and is deep so not great for sitting in. We have a big leather sofa which is lovely and comfy but if I lay down on that I never get up again and can't see the TV well from laying down position. I also tend to find if I am on that one, I end up with two children and two cats sitting on me , it's actually very comfy to sit back in, but I am fully aware when I do that it squishes my spine and I suffer when i get up. Someone told me to bring in the kitchen chair to sit on er, no! Hard chairs, like you, increase my sciatic pain, down the buttocks into the legs. Like sitting on knives.

I am in reasonable shape this evening! YEY! I have had some increase in pain in back on one side, and in my hip oddly enough, but it was worse when driving, carrying kids swimming bags etc, and eased with painkillers. I am finding that I need to keep up the 30mg codeine though to have the reduced pain. So think I am going to work taking codeine, which I don't like doing, but hey, they want me there, I have to be high (although it barely makes me feel out of it any more ), but I am in bed, and where recently I have felt crap with leg pain, it is there, but less obvious.

And. I am getting my hair coloured and cut tomorrow! Nothing fab, colour wise, just removing white hair, and replacing with dark flat brown. The hairdresser is always like 'don't you want some warmth, some tones? bit of red/copper?' no. Just. Brown. Thank you! I am having trouble with hair styles though. Maybe you can help? I might do a thread. I know what I want but can't describe it - short, bold, heavy at the front, I am thinking Chrissy Hinde, but not sure if that's what I mean (goes off to google).

goodness how are you doing? scone how are you? hope you are both doing ok and that the nurses are looking after you goodness.

no not young chrissy hynde, but her hair was fab, mine is too thin.

Hullo fellow people suffering with stupid bloody backs. I am Losty and have seen you about but thought it would be bad for me to talk about pain too much. Then I read the thread a bit and caught you all talking about the joy of lying down for a whole day and realised I was with my tribe. Is there space in the quiche for me and my electric blanket?

I finally, FINALLY got my first pain clinic appointment today, 25 years since my back pain started and only because I paid for a private consultant last year because I figured if I was paying for him he'd have to listen properly. He didn't really but did send me for a bone scan which showed I have degenerative changes the length of my spine and my SI joints and nearly every other joint in my body. Which was nice. (Fun taking my scan back to GP though, ME; 'I told you everything hurts' HER; 'more tramadol?' ME; 'That would be nice but could I have a referral to pain clinic and perhaps rheumatology?' HER; 'Well if you really think so' ARRRGHHHHH.)

My main problem is my thoracic spine which has bony bridges joining most of the vertebra (but not ankolysing spondylitis as although the x-ray pattern is almost perfect for it I am missing a blood marker so it can't be that apparently.) I am working with a diagnosis of idiopathic inflammatory spondolitic arthritis, which I think means, 'her body is eating her spine but we have no clue why'. It hurts. I live on my beloved tramadol but today discovered the joys of having anaesthetic injected directly into the sore bits which was brilliant and I have an appointment to have the same done to my SI joints hopefully soon.

So cheers have to mix happily with your opiates/opioids, I will pop back tomorrow because I drove for two whole hours today and only you lot will know that that is enough to have left me buggered and ready to embrace the horizontal in the company of my electric blanket. Sleep well.

I'm on a budget at the moment with regard to hair (as well as chairs), but I am thinking of being stupid brave and giving the MN home haircut a try. I found a grey hair today argh maybe I will need to colour it too.

lost you are so welcome here! I am going to read your update and then I will post again.

a grey? I have a WHOLE head of white. at the front, if I grew it out, it would be pure white. I am mid thirties. it's shite. My hair is naturally dark, so my roots look very very bad if I leave them. I have so much white that I can no longer dye it myself as I end up with luminous orange roots and black rest of my hair. And blonde, erm, don't go there (dark gree/brown eyes, very dark brown eyebrows, hair went yellow, not blond. Apparantly known as copper blonde )

I thought I'd had a good day.
Walked unite a lot - albeit like an old lady, not so faint, great BP, friends visited. Now this:
I've been sitting in the loo for an hour enough trying to push out poo number two (in a week) to now know it's helaemarroids. Bad case. From drugs causing constipation. It's shit. Literally.
Laying on bed feeling v low.
Waiting for doc to examine my bottom!

I know I've got to see wee doctor (chronic stress incontinence), physio, bloods guy (calcium, Vit D, thyroidy stuff), back man, tumour man, etcetera.and am waiting for results to see whether I bed to meet Rare Fucking Aggressive cancer treatment-needing tumour Lady... But now, I've got great big mega-poo sized haemorrhoids.
These ones ain't gonna shrinky dink away in a hurry, apparently. Nurse reckons it'll be treatment necessary for it.
Felt so happy today. Been making so much progress. Upset. Could burst into tears. But no ones here to give me a hug.

lost you like the tramadol then I don't take it now, having tried to come off it for a while I finally did, but, realised that I probably needed it! So, am considering a return, but trying some other stuff first. I am sorry for suck a shit and unclear diagnosis. You will find on this thread that is a common story. Injections! another from me! Well, not really, as the reason for you needing them is not good, but you know what I mean. Pain clinic are not giving me them yet ever

Why is the answer by GPs to pain to say 'here, have lots of opiates!'

goodness oh no, that's horrible! you poor thing. Are they able to sort them quickly for you? Will it be more surgery? but, on a positive, well done for your moving about!!!

Can you call DH for a chat? Is he being supportive?

Hi Losty cheers. But very sorry to hear about all your pain and useless doctors. I hope you get some help now with the new info. I know its not ankylosising spondylitis but there is a no starch diet that helps some people with A.S, my sister once tried this diet for IBS and my uncle actually did it for health and weight loss they found it really good. If you feel you could live without bread could be worth a try.

OMG goodness it really is too much. Gentle hugs from me too. But well done on the walking.

pavlov there is a woman at work who has arthritis in her hips and back but it is not so bad that she has had time off for it, also I have seen her lifting heavy things etc.and she told me today they are going to put an epidural block in and will top it up every 3 months ( not sure if I got the correct terms there but this is what I think she said). I'm not saying she doesn't need it but if they will do this for her i can't understand why they won't give you injections.

what is that all about, if you don't have enough to think about and then you get the bottom of doom to go with it. Not very fair for you, hope you can keep the number of people you have to deal with to a minimum.

Extra for Pavlov, yes the tramadol keeps me from going insane, thank you so much for talking me round!

I have mostly gone gluten free in the last 12 months and I don't know if it is the main reason but on a diet of almost zero processed foods, lots and lots and lots of joyful full fat products and no pretend sugars, I have lost over 3 stone. I am not questioning why I am just enjoying the new clothes. Doesn't seem to have helped my bones but smiling at my cheekbones in the mirror goes a long way .

losty way to go on the weight loss! My diet consists largely of haribos at the moment. I am a bit obsessed with jelly sweets since taking nortriptyline. Didn't read that as a side effect .

live oh I have no bloody idea why they won't do it. I suspect the pain clinic guy said he wanted to wait/might not be best route, the nurse ran with that and said 'oh no!' and gave me some bollox to look like she knew what she was talking about as the explanation of why he said no. I don't even know if she has the 'authority' (?) to make that call. I need to get on it again. But I have spent the last few weeks chasing people (still no MRI letter from neurosurgeon, exactly 2 months ago now) and I just don't want to chase any more. For now. I need to get my fighting energy back. And then I'll kick some ass {excuse the pun for those with isshooes there )

oh yes, definitely cheers to the tramadol losty, is it the modified release? Talking of which matilda how are you finding the slow/modified release tramadol?

I just don't know. I'm so down.
It's.. Shit

An old colleague of mine used to use bead mats on his chair so i tried it out sometimes and was not sure wether it would help me, so ordered a wedge seat padinstead.I now have 2 wedge seat pads. I did not intend to order two but made a mistake on amazon! It's the one I did not intend to order that I like the best, as it has a cut out at the base of the spine. I am also being very strict with myself on how I sit, avoiding crossed legs. I really don't know if anthing is helping !
Hope you all get a goodnight tonight.