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 ask for pain relief and to be moved. Any time you need to. Don't be afraid to disturb them. It's their job to make sure you are properly cared for, and they wont mind even if they don't smile. and if for some bizarre reason they do mind, tough. woohoo 2.5 hours, that'll get rid of any sleep issues

cowmop can you drink wine? if so i have heard that Aldi does fab medicinal wine. I don't know from personal experience, as we shop at Lidl, but suspect the quality is similar. Aldi do fab Tawny Port for £9.99. Not that I can drink very much at the moment. I did have a small bottle of Staropramen which is my favourite beer. I don't like lager, and ale is too strong, this reminds me of buying beer for significantly less than a coffee in the mornings in the hotel in Prague when i went on a 'politics/research' drinking and partying trip at uni (something like 50p, vs £1.50!)

Glad you managed to get to bed eventually, hope not too cold. Shame you woke up so early! I slept very well! I mean, I woke lots, as I always do, but, I got back to sleep relatively well, and when I didn't, I could just relax and not get frustrated with snoring or a child trying to cuddle me off the bed. Got woken by everyone getting up and DH bringing me in a coffee. I don't feel headachy or grumpy this morning (although could do with another million hours sleep) and felt ready to wake up. Although, waking on the sofa means I am now sat on the sofa and have the illusion of having got up so don't feel lazy, when in fact I haven't actually got out of bed

DH and I are the same, we bicker, we argue, we properly irritate each other sometimes. But we also love each other, we laugh and have a good time - less so of the last two together lately, but we have spoken about that at length and know we need to make time for us together that is not about me/my disability or the children, we both know this is a 'patch' to get through. Glad you have support through this shines, I can't imagine how hard it would be to do this alone or with someone who resents it.

goodness sorry to hear about the pain, i agree call nurse if it gets bad that is what they are there for, also this gives them information on how well you are doing and what level of medication you need.

goodness sorry to hear about the pain, i agree call nurse if it gets bad that is what they are there for, also this gives them information on how well you are doing and what level of medication you need.

Hi cowmop glad you are feeling a bit more positive. It is good to have a bit of a moan to friends who have similar problems though when you are feeling bad. So have a moan if you need to. I do think it helps your mood if you think positive though and focus on the good things in your life. Not easy when you are in pain though.

Coming on here makes me realise my back problem is not that bad, but everyone is so supportive and helpful with advice, which is very nice of you all. i feel like I am in a lot less pain now, but I want to be sure to have the best chance of long term recovery. If i had known more about backs perhaps i wouldn't have got this bad in the first place. So please continue to advise me if you have time.

I felt awful after my physio yesterday, my back really hurt and felt completely drained. Its weird as she only manipulated my spine for about 5 mins, plus reviewing my exercises. But after I left the room I started feeling bad and my back hurting. Actually am hoping this is a sign it is doing some good as it is back to normal this morning. Achy but not bad pain. She did seem to think the stiffness in my calf was unrelated to my recent back problem, as my other calf is also stiff, but I think it is the sciatica because of the numbness and aching (i can feel it a bit now) and tingling i get in it, and although they both hurt when stretched it is a different feeling a bit sharper pain when I bend too far like a pinch. It was hard to describe when I was there though, I often find pain comes on some time after I do an action. But both calves are stiff so it won't be bad to stretch them I think.

Hi cowmop glad you are feeling a bit more positive. It is good to have a bit of a moan to friends who have similar problems though when you are feeling bad. So have a moan if you need to. I do think it helps your mood if you think positive though and focus on the good things in your life. Not easy when you are in pain though.

Coming on here makes me realise my back problem is not that bad, but everyone is so supportive and helpful with advice, which is very nice of you all. i feel like I am in a lot less pain now, but I want to be sure to have the best chance of long term recovery. If i had known more about backs perhaps i wouldn't have got this bad in the first place. So please continue to advise me if you have time.

I felt awful after my physio yesterday, my back really hurt and felt completely drained. Its weird as she only manipulated my spine for about 5 mins, plus reviewing my exercises. But after I left the room I started feeling bad and my back hurting. Actually am hoping this is a sign it is doing some good as it is back to normal this morning. Achy but not bad pain. She did seem to think the stiffness in my calf was unrelated to my recent back problem, as my other calf is also stiff, but I think it is the sciatica because of the numbness and aching (i can feel it a bit now) and tingling i get in it, and although they both hurt when stretched it is a different feeling a bit sharper pain when I bend too far like a pinch. It was hard to describe when I was there though, I often find pain comes on some time after I do an action. But both calves are stiff so it won't be bad to stretch them I think.

Sorry for double posts having a problem with my phone

Sorry for double posts having a problem with my phone

Feeling down
DS' behaviour hasn't been good. School called me!!!
I'm anxious as they r removing back drain at 2pm today. It's gonna hurt
I'm so worried about DS' behaviour once I'm home n DH is at work. So worried
I sat on edge of bed but almost fainted standing n I thought I'd b able to walk couple of steps
Worried about going to loo as will need to b in bed pan
Feel low

Pavlov unfortunately I can never ever not ever drink again because of the epilepsy medication I take. Obviously this doesn't bother me at all, much . I'm glad you managed some rest even if it wasn't all sleep and am hugely jealous of the morning coffee in bed/sofa.

Live I think pain is pain regardless of what causes it or how long it lasts, and a bit of support makes all the difference, especially if that support is coupled with some knowledgeable advice as it is here - sadly my knowledge is lacking but I've a big stash of tissues. I'm glad you're feeling better day by day, although your calf still sounds painful. If it continues I'd chase down a second opinion.

I did the Aldi thing and now have a fridge full of veg so will be cooking next week come hell or high water! I've made a double chocolate loaf cake which is currently cooking and a batch of oat cookies to put in later. I'll probably pay for it all this evening, but at least I will have cake to eat!

goodness it is 2pm as I write so I hope you are ok with your back drain removal. Don't worry about DS as worry is not good for your recovery. Have the school call your DH until you are up properly, as he is looking after DS day to day for now so needs this info. Do they know you are in hospital and what a big op it is? If not maybe they don't understand why DS is upset. I bet he will calm down once he sees you are getting better. He is probably worried and upset about you being in hospital. When you are home, he will be happier already. Do you have a helper arranged for when you first get home?

Sorry if this posts twice I am not sure why it is doing that.

goodness it is 2pm as I write so I hope you are ok with your back drain removal. Don't worry about DS as worry is not good for your recovery. Have the school call your DH until you are up properly, as he is looking after DS day to day for now so needs this info. Do they know you are in hospital and what a big op it is? If not maybe they don't understand why DS is upset. I bet he will calm down once he sees you are getting better. He is probably worried and upset about you being in hospital. When you are home, he will be happier already. Do you have a helper arranged for when you first get home?

Sorry if this posts twice I am not sure why it is doing that.

That's great cowmop if you can't have wine at least you can have ! I don't know about your condition but I am finding it best to keep moving gently (except last night when I lay down all evening) so doing some cooking may be o.k for you as long as it doesn't hurt too much. Now I am better I am ok in the kitchen as long as I am careful bending and lifting.

pavlov at you being so pleased to sleep on the sofa. I was thinking about what you said about getting a cleaner and I think that is a good idea if you can afford it. It would mean less work for your dh but if you are not well enough he can do the tidying before they come. As for your idea of putting a box in each room and chucking eveything in it, my sister does something like that but has a nice looking covered basket from Ikea to put it in (her mess is mainly toys) you can even get the kids to help with this. Then you can just do little spot cleans during the rest of the week using the Dyson stick if you get it, again if it is very light maybe the kids will like to help.

Goodness I cross posted with you earlier. I hope the drain removal wasn't as bad as you thought and that you are resting. Remember it's a big thing you've had done, so take baby steps at the moment and don't expect too much of yourself. I totally agree with Live about your ds, school need to contact your dh, not stress you at the moment. I'm sure he will settle once he see's you back where you should be.

My mother (aged 80) has a spinal cord stimulator. She had had multiple surgeries, injections and various physical therapies previously. It has made a significant difference to her and whilst certainly hasn't solved all her pain issues it does provide valuable relief. It's been in for a few years now and the battery will probably not last much longer. I'm not sure how major the surgery required to replace it will be and how that weighs up against the risks of the procedure at her age, but I believe she'd be very disheartened to no longer have the device available to her.

Just had bad news about things. If it's not the low grade cancerous sarcoma that they thought it to be, it'll be something worse as it is something called Fibromatosis that has a high likelihood of coming back and would need cancer treatment incl. chemo, radiotherapy, etc.
this is very rare. Not a cancer so no support from cancer charity.
Will know next week what it is. I was afraid of it being a low grade sarcoma but turns out that'd be better as would need only to be taken out. No chemo etc.
my head and emotions are upside down. So yet another wait - beginning of next weeks or histology results, they think. It ain't all over
I never thought I'd wish it was a low grade sarcoma!

Back drain out though. Not so bad

Goodness I'm glad the back drain wasn't too bad to take out, but really sorry the news on your potential results isn't more positive. Is it now definitely one or the other? As you say, you never expect cancer to be the best of a bad situation and I'm not surprised you're upside down. I hope you have someone with you to give you the support you need and a massive very gentle hug.

Keep posting when you feel up to it and if there is anything I can do at all just say. You are very much in my thoughts. Try and rest. x

view oh that's interesting as the pain clinic spoke to me about a spinal cord stimulator to help with nerve pain. I will look into that in more detail if I ever get to see another actual human being at the hospital that has a clue what they are doing.

goodness posted on your other thread. I am thinking of you x

Pavlov, do you want me to ask them any questions if I speak to them/ anaesthetist /nurses again?
I honestly think I just took about 7 pills. Feeling drowsy n looking forward to being ... out of it.
Dreading failing at Physio. Just took 2 more senna
Desperately hoping that Mr Poo doesn't cone before I am able to get up to go to the loo!

Questions goodness? What, like can I have some of those drugs? not sure they will let you out of there with any of them I hope Mr P makes a smooth appearance with your dignity in tact. And hear is to being out of it and having some sleep. I won't say try not to worry as that's obviously not going to happen, so, just let the meds help you with the pain. Don't expect too much from physio straight away. I remember getting up to use the commode for the first time and throwing up as soon as I lay back down. But, that was a day post surgery and so I was still very woozy from anaesthetic, so you might not feel sick. Although, you might on your concoction of drugs...

cowmop I actually don't feel it's so bad not drinking. I mean, I do enjoy a glass of wine, or a beer, but, where that would be a glass of wine most nights, since my back problem and all the drugs and inability to drink, that even when I am able to drink I just don't enjoy it after one or two glasses of wine and happily go without for a long time. I would miss coffee much more if I had to stop that. I have cut down loads, but can't stop completely.

Hope everyone is having ok pain levels. For those who minimising their experiences of back pain, there is no competition. There is no such thing here as 'mine is worse than yours'. Back pain sucks. Full Stop. Whatever level it is at, whether it is constant or intermittent, it impacts negatively on all our lives and causes a huge amount of anguish. So, please don't think you have it easier than others. You don't, it's just different for each of us.

Sweet dreams to all

H everyone, I wrote a long post last night which vanished very annoyingly. I'm having a good time here in the Far East. It's hot, sunny and breezy. Apparently the nicest weather anyone can remember because it is usually very humid and can rain a lot. I've explained to everyone that the rain has transferred to England!

On the subject of having a cleaner, here it's totally normal to have a live in helper who basically does everything. It's a bit weird and uncomfortable but frankly, I'm loving it for a couple of weeks.

My back did seen maybe a fraction better yesterday having had injections on Monday. By evening when we went out to dinner at some friends of my family, I retracted that view. Meeting new people and really not wanting to draw attention to 'My Condition' is hard. I just longed t leave the table and lie on their sofa.

goodness, bloody hell. What a situation. I guess for now maybe concentrate on the next hour or two and smaller, more manageable issues like having a poo...I'm thinking of you. I'm absolutely furious for you the school phoned you.WTAF did they think they were doing? I wish you could take a selfie and send it back. Also hope your DH complains. However, you are right, you cannot manage alone when you get home. Not even if it was only you let alone dealing with dc.

As an aside you've probably thought of this but do check if you have Critical Illness cover. They will pay out for this.

view, thanks for the info. I've been offered this option but didn't really fancy it so it's interesting to here a positive experience. Changing the batteries isn't a big deal, I'm told.

To everyone else take care a chins up. As an aside, it's exactly two years ago today my disc went and exactly one year since I had my second surgery. I'm thinking of staying in today .

Critical illness cover covers childcare?
I'm sad this morning. Cried when woke up. Like a baby. Nurse said:
At least you're young (41!?!?) you have to fight for yourself.
Crying - this is the first time I can remember - is important too.

Crikey Goodness I thought I was a bit lame at giving words of comfort, but that nurse has beaten me hands down! Have a good cry, it doesn't matter, do whatever makes it easier to cope for the next couple of days, including taking any drugs offered, having a good cry and posting on here. I know we're just people on the web, but we are thinking of you and hoping for the best outcome possible. I'm sorry you have to go through this and always feel terrible for anybody waiting for results. It must be especially difficult when you can't get up and try and do stuff to take your mind off it and when the options for the results have changed from what you originally expected. So as was said up thread take it an hour at a time.

Matilda I continue to feel massively jealous and am not sure I'm speaking to you! You could have surely fit a couple of us in your case, we're very flexible. Sorry the injection hasn't given you much relief, but maybe some good weather and relaxing will help.

Pavlov to be honest I've never been a big drinker and have only every been more than tipsy once in my life. I disliked it intensely and so tended to be the designated driver. It just seemed like sods law that as I had my driving license taken off me I was given tablets that meant I can't drink. I occasionally think, bollocks, I could do with a drink, but in reality I probably wouldn't even if I could.

View I'm going to have a google about the stimulator, it could be worth be asking my GP about.

Hope you all have as good a weekend as circumstances allow.

goodness, if you have CI insurance get your DH on the phone faster than fast. My friend had breast cancer last year. Very unpleasant, of course, but treated with lumpectomy and radiotherapy. Full recovery totally expected. She received £188k. Yes, you did read that correctly. I am so, so sorry you are going through this total crap but, if you can get any financial help you will so deserve it. It sounds like you very urgently need help with ds. In fact, calling SS children's services might get some action. Not you, of course.

I've had a nice day. Morning lying outside reading. Then a swim in the pool then a walk along the beach and a drink in a beach cafe. Now really sore so lying on bed hoping drugs will work fast as we are going out to eat. I hate asking so hope the chairs are ok. I understand fully you all hate me but I do deserve it, honest! Wish you were all here, too.

pavlov, I'm still not understanding why you can't have injections if they help? So stupid. The chap who did mine this week said that if we can find the right spot then he could do a long lasting injection. This sounds ideal for you...I'm thinking you have to get noisy soon and explain your job is at risk. Obviously you are crying at this point . I'm just so angry the way we get treated.....