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)

Not done gym yet, going to try to go this evening, but if not. going in the morning. Definitely this time. My gym stuff has not arrived yet, probably won't until Friday or Saturday as they are slow. One incentive to go to the gym is that they have a disabled shower and I can reach my legs there by sitting and leaning my leg onto the side rail, I can shave my legs then! Can't do it easily at home.

Got distracted watching some tv with DH. We made up and needed some chill time that as not about my back! He wasn't working til later so we slobbed for a couple of hours.

I rely on DH to do most of the heavy duty stuff now housework wise. I do vacuuming on my really good days, or when I can't bear it any more. He does it once a week or so. He does floors, empties dishwasher, washing, cooking, shopping. I just dip in and out of whatever I can manage at the time, like picking things from the floor with my grabber, putting clothes away, dusting,organising, helping with clearing from dinner. Sometimes, I can d th whole lot and I will do the dishwasher or put some asking on, but no reliably so.

I've seen physio for the third time this afternoon. he thinks most of my shoulder pain and various niggling pains is due to disc bulging out between vertebrates 3,4 and 5 in my neck .

he spent at least 20 min testing pain level in my hand depending on where he put pressure on alongside my spine in the neck area.

That area all feels swollen and sore. I know now why!

I have an exercise to do every 2 hours, which only takes 2 min and would help to diagnose better what's going on.

I wish I had gone sooner!

Glad you made up with dh pavlov. I expect you were both stressed out with all the disappointing stuff about your treatment. But sounds like you are getting a plan now, so hopefully that is a bit more positive. Its good that your dh does all the heavy housework, but must be a bit frustrating for you. Normally I don't want to do it, but I hate it when I can't do something.

antimatter that sounds good, I must say I am rubbish at remembering to do something every 2 hours and would be sure to keep forgetting. How are you getting on with it? Can they treat your neck problem once diagnosed? I have been having physio and he always says it may be sore after he works on the spine, so take drugs care if you are uncomfortable.

anti that sounds painful, so many bulges! but great that the physio feels he can help. I really hope that you get some longer term relief from it. Has he spoken about steroid injections? I have heard that this can be particularly useful for pain in cervical spine due to disc/nerve problems.

live I do feel crap about DH doing it all. And, I do things differently better than him, which is where part of my new learning to let things go attitude stems from, I really don't want to be a nag, reminding him that the washing needs to be put into the dryer, or the dishwasher needs emptying or the bins put out as they are stinking, or really, can't he see the floor needs a vacuum, or he has done the vacuuming but only the middle and missed the edges. That is something I have always been a stickler for, hoovering the edges. I so have to let that go now and it's a tough one I do it sometimes though, I get on the floor, put the edgey nozzle on and do it, as it doesn't involve push/pull And DH feels it too. He is not a natural cleaner. Well he is good at cleaning, but he is a starter and not a finisher. But that's how I try to help now, he does the kitchen floor, dishes, pans, bins. I then put the things he has finished with away (he can thoroughly clean the kitchen and yet leave no side usable as it's got stuff on that he has moved from elsewhere and he leaves water in the sink, and cleaning products on the side ), wipe the sides, sparkle the sink, tidy the table. But, don't think for a second I do that daily

Gym hasn't happened. I cooked dinner which is rare for me. It took me much longer as I am sooooo slooooow And i had to put baked potatoes in the oven and that involved bending, heaviness etc, had the children helping which hindered somewhat too, but they 'made' the salad. It's amazing how well a 4yo can cut cucumber with a blunt knife you know we didn't eat until 7pm. And then I couldn't find my ipod and I simply cannot do any exercise without music! Found it, then it was too late by 7pm I needed to eat. Normally I eat when i get back, but if I go at 7pm, won't be back til 8:30pm-9pm and I ate lunch early. I have been known to go to the gym after working late and come home at 10pm, but I will have late lunch/big lunch to prepare myself for that (I miss that!)

I am not going to even say tomorrow. I will just see

Hope matilda got to Singapore safely

goodness and scone when you both read this, we are thinking of you both x

He claims we can do a lot of progress with various specific exercises. My condition isn't too acute. I ca nstill turn my head both sides without any pain

Pain is affecting my right arm. Due to that pain I wasn't able to sleep night through, the worst happened when I was woken up by it 6 times in 7 hours And couldn't find comfortable position to get back to sleep. Now with his assessment, easy exercises he gave me and a bit of massage he applied I can sleep through the night! I feel my hand getting tired and it begins to feel useless during my commute when I am driving. I have an office job (I work in IT) and my home set up for my laptop is terrible.

I don't feel very sore but he says he prefers to work wit hexercisws than manipulation, I am very fortunate that I have provate insurance and no limit on any types of visits to health specialists. I am going to take full advntage of it as it covers alternative medicine too so I am looking forward to Alexander technique and perhaps osteopath who also teaches pilates.
But first many weeks of physio to understand what exactly is going on in all parts of my spine.
This diagnosis really surprised me as I didn't think my neck was in such state already.

This physio is fully booked and I can see why! my slot is 3:30pm, that means I will be finishing my work earlier for many weeks to come. I start at 6 and usually am out of the office by 3:10 pm. I need to finish at 1:45 to make it in good time to see him.

I am learning to observe my body and report back, he uses it to understand where possible damage is.
much slower that osteopath, but unfortunately osteopath never taught me any exercises

BP under 80
Pain killers working well with the new mix
Passing too much water - full bag every hour.
Apparently
Been checked by lovely doc who is happy though.

I'm safely arrived in sunny Singapore, the flight was ok. I had an expensive seat, though. Terrible food even then! I asked for assistance at the airports expecting a buggy but got wheelchairs which is awful. The terminals are huge, though so no option. I was looking foward to using the club lounges to the full but got whisked away far too quickly!

So glad goodness has come out the other side and is already posting.

pavlov, thinking of you! you sound thoroughly fed up. I so get most of what you're saying. Essentially nobody knows your condition like you do. Most of all it is not all in your mind. It does however, mess with your head. When I'm not in much pain I truly do forget what it's really like when it's bad. I kind of doubt myself...then it reminds me.

As for the DH thing, well, it's not what they imagined. But you didn't either. My DH will do almost anything on a practical level, though we do have help. What he can't do, though, is the emotional stuff. I accept that and use my girlfriends for that. Our marriage has changed, in some ways worse but perhaps it has made us closer in some ways.

I'm off to the British Club for lunch and laze by the pool swim. Sleep well.

Oh what a lovely morning
My lines have been flushed again
Oh what a lovely morning
Tram and morphine for the pain

goodness, many stars have written their best songs whilst totally off their heads on drugs .

Seriously though, hope you're comfortable and not too miserable. Chin up.x

For those who can't manage a Hoover but hate dirty floors I swear by this:

www.gtechonline.co.uk/floor-sweepers/sw20-premium-cordless-floor-sweeper.html

It's not a full vacuum but pretty good on hard floors or carpet and both cordless and extremely light. Ideal for top-up cleans.

More money but so worth it. No, I'm not on commission .

That does look good matilda and not that expensive really compared to a small hoover. But I bet you will not be hoovering for a few weeks while on holiday! Hope your back is doing ok now. The weather here is cold, grey and damp if that makes you happy.

goodness hope that pain relief is working well and you are healing nicely. You sound happy at the moment

I felt much better yesterday evening so I think the naproxen is helping. I did try to keep moving more too, but that ache when sitting had eased off. I am a bit stiffer again this morning though. I do have physio later and I am hoping for a different one who I can talk to a bit more, my current one is ok for exercises and massage, but not very easy to talk to.

We bought a little rechargeable stick vaccum (Dyson DX5 I think- the one that was trialled on here about a year ago - but I missed out on the free ones- very expensive) It has made cleaning up much less stressful. Dust with it too. It has a few negatives like refusing to charge on off days and getting blocked up far too easily, but is light and well balanced for those of us hobbling. Not available on the NHS sadly. Now theres an idea - I am sure the NHS could get a big discount!
Goodness thinking of you. Glad you are well enough to post. Hope you are soon needing less meds.
Matilda very adventurous to go as far as Singapore. Glad you arrived OK. Did you have one of those seats that folds into a bed? Sounds very exciting.
Pavlov sorry you are having such a difficult time. I have a cleaner/home help come once a fortnight. She is lovely -does things differently to me, and I have found it helpful to very deliberately notice what she does well IYKWIM. Then fix what I cannot live with if I can and ignore the rest. She is ace at cleaning windows and sinks! Sounds like you are doing the same.
Antimatter sounds like you have an excellent physio. I am waiting for my physio appointment, and hoping for exercises to keep me functioning and stop the regular ceasing up.
Saw the chiropractor - am going almost weekly at present (although I cannot keep paying for much longer). She has some gadgets that measure temperature at each vertabra, and nerve conductance (thermal and EMG scans)- I don't really understand. This is my third exam with the gadgets - the first showed inflammation(at their highest scale) and lots of nerve compression just about everywhere. By the second some things were worse in some parts but the general trend was less asymmetric, and certainly my back pain was worse at that point. Today whilst still a way to go things were looking rather straighter, cooler and more functional. I then went straight to a gentle yoga/pilates class and am now hobbling again!! Still I have a little hope. ( I was loosing confidence as well as money) I can also blame the compression of T6 for my chocolate craving, C3/4 for the CFS/ME, L3/4/5 for my clumsiness! I wonder which vertebral subluxation is causing my forgetfulness and bad spelling? - I know I am still a bit cynical but I have got a lot better (ME wise) since trying regular manipulation even if my back does not yet feel better.
Wishing all recovering from surgery uncomplicated, effective and comfortable recoveries, and lovely inspired professionals around you. The rest of you - good sleep, low pain levels and wisdom not to overdo it!

Just thought I'd say Hi. I've been reading and keeping up with everyone, but just couldn't really bring my self to post. I'm so glad you've had your op goodness and that you seem well medicated at the moment. I'm totally jealous of you Matilda, there's not much I wouldn't give to be able to check out of everyday life for a few days! Glad you're doing better today Live and that everyone (mostly!) is receiving some treatment or physio.

I'm not feeling any difference from the patches apart from total exhaustion, they've really wiped me out. I've not really come to terms with my back and am feeling really low that the best I can seem to expect is "it will get worse". A few people have told me too push for another scan, but in all honesty I can't see what difference it will make. I'll still be in pain, I still won't be able to do the things I want to do or the things I don't (cleaning the bathroom!), I'll still have dead/painful feet and fingers and (tmi) I'll still not be able to pee when I sit on the loo, but manage too leak otherwise. I've got to go back and see someone as I haven't had a period since October, and Mum is constantly nagging me about it, but I just know if I go I'll end up in a heap in the corner of the doctor's office. And yes, I know it could be so much worse, but fucking hell I feel shit at the minute.

goodness I am so pleased you are out the other side now and can start your recovery. Good to see you are properly medicated and hope you have lots of lovely support around you right now in RL. scone if you are reading this, hope you are making good progress! thinking of you too my lovely, hope you have some relief from pain.

cowmop [hugs] I don't care if that is not mumsnetty, I am so sorry your patches have not worked, and so sorry that you are feeling so shit. I know what you mean about not coming to terms with your back being this way. I still refuse to accept this is normal, and it makes me sad, frustrated, angry, upset, scaed that this might be forever. I refuse to accept but also know it might be, it's a weird feeling. If they have given you patches, are there other direct pain management options available like injection?

matilda enjoy your time! Thanks for your support, I know, when I think about it, that it's not in my head, logically I know I am not imagining this, but then, I doubt that logic.

magso we almost bought that dyson, it's perfect as we also have lots of stairs, and funnily DH mentioned it again today when I showed him the link from matilda it's really expensive, but, DH really thinks in the long run it will make a huge difference, as I can do messy better than dirty. If I can vacuum the rooms quickly more often, I will feel happier (two young, messy children and two cats that shed hair like crazy). I suspect we will jut get It. Problem with cleaner, which we have debated long and hard, is that I don't know where to start, what would they do? My understanding is that the place has to already be tidy for them to clean it and I just can't always guarantee that. I had thought about having some boxes, one in each room on the days she is due, and get her to sling anything lying around into it, and organising but literally just clearing it and I can put it away. What does your cleaner do? If we did get one it would help, as when I am well, we will live in a lovely clean place as I can do more, and when i am having a bad few days/weeks, the house won't turn into complete chaos. Can I ask what doz your cleaner do every fortnight?

...the wisdom not to overdo it erm. I am not wise. I overdid it in the gym. I read that post to DH and he laughed and said I am not wise. But I am not sure he is really laughing. He is a bit cross as he has the weekend off first time for Ages. But, I was so pain free I just wanted to keep that going. I felt normal, for the first time in a while, and I had some good tunes to listen to, so I stayed on the cross trainer for an hour fuck it. If I am gonna hurt, let's have a bloody good reason for it for a change. I do also have a little gentle swim on my back, spa for ten months and steam room for ten. I felt fabulous. In pain, wow, lots of leg pain. But emotionally, endorphins are much better than drugs! I feel happier, fresher, less groggy, less, yucky, more glowing, perhaps the drugs have kicked in. Bbt doubt it as I missed last nights dose...

I would include myself as lacking wisdom - having reorganised my wardrobe so I can actually find the warmer clothes. It is just too tiring to get at the stuff at the back.
My cleaner is really a home help so she comes to help me tidy up - as I cannot lift and carry stuff. She started when I came out of hospital using a grant for carers who have had surgery (of all ages even though she works for age UK) so although I am younger than her usual clients she has stayed - without the grant now of course. Ds is extremely messy drawer tipper outer, and mostly we concentrate on keeping the chaos he creates under control. For a while she came every week (the chaos once I got out of hospital had accumulated) but now it is more organised - and ds gets more respite. She cleans the bathroom and toilets, helps me change beds, cleans windows now and then but leaves the kitchen for me. Occasionally we clean a cupboard out together. She is used to a lot worse and is quite unshockable!! She could collect shopping and put it away if needed but I can do that myself now. If time she irons as I struggle with this sometimes despite sitting to iron. Since she has been coming regularly things are more under control, so she can do more of the routine jobs. We shovel (literally) ds toys into toy boxes - and bin bags if need be!! I have spent years trying to teach ds to tidy and feel quite a failure so I do tidy up before she comes - but she is quite happy to join in with this! I found it very hard at first. I do like a tidy house!

magso, you're cleaning lady sounds like my mum. Maybe I should start renting her out! I'm also lacking in wisdom, I've run toddlers this morning (though I have finally given in and stopped putting tables and chairs out) and made pizza and wedges from scratch this afternoon and so am now sprawled on the settee debating dragging my sorry self to bed.

pavlov thanks for the hug, made me quite tearful actually (I'll blame the patches!). It is a hard thing to accept, I keep thinking I'm just not what dh signed up for anymore and have said as much to him, the reply? Don't be bloody daft. Which is lovely, but I still feel guilty. It's good to be able to speak/moan to people who are in the same position and have a real understanding of it all and the effort it takes just to keep the pretense of normality up from the day to day.

Can't remember if I've said this already, but my sister has lower back problems and was diagnosed with ddd a few years ago. She has had a bad spell recently and a good gp so has been sent for a scan after a telephone consultation. She spoke to the gp the week before Christmas, had the scan the first week in Jan, got the results in the post 10 days later for her to take to physio and a phone call from the gp asking her to go in last week for some blood tests (inflammation) and a chat about the results and treatment going forward. It made me think if one trust can work like that, why can't they all?

Enough moaning for one day. Go steady everyone.

cowmop I know what you mean about the trusts. And within trusts too! My colleague who has been off with serious back problems, her Gp happened to have specialist knowledge/interest in back problems and so was able to know more about what might be wrong, what she needed to do, he did some manual manipulation and within the 6 weeks she was off she had x-rays and consequentially a quick diagnosis, well, clearer idea of what was going on, probably not as simple to say diagnosis as we all know here, that's almost impossible to get from anyone about back problems! And I am still waiting for my consultant to contact me following my MRI at the beginning of December, which he ordered! I am thinking of writing a letter to him. Not PALS etc, but to him, outlining how things have changed/progressed and that I would prefer to not just be fobbed off, I would like a chance to sit and discuss the content of my MRI and previous issues, and find what WILL work. His view is that he is a surgeon, so anything outside of that is not his remit. But it has to be someones, and no-one else is taking this on as their remit. He is best placed to tell me what the fuck is going on, no-one else is going to be able to do that.

Not sure if you have read my recent, and probably older posts about that guilt with DH too. He insists he is there no matter what, and does not resent it, that this is how we are meant to be, together, as a team, the rough with the smooth. He says it. but words are easy to say and I worry that he doesn't always feel it. I worry that one day, someone fun and interesting and not with a medical condition will come along. Well, not so much that, I worry that he will feel duty bound to me, and I don't want that. I don't want me and him to be together because he has to care for me. Like you, and others here. I am not ready for it yet. So, I know what you are feeling. And my situation is really not so bad. Not really. I have to remember to put it into perspective. But, it's all relative isn't it, what we experience.

oh, and re you dragging yourself to bed. Get this. I am sleeping on the sofa tonight and really looking forward to it DH has had a horrible chesty bug, and although mostly over it, it has affected his breathing when he sleeps, I think it might be his throat? so he is snoring badly, and keeps turning onto his back and snoring, but not evenly, in fits and bursts. I sleep really badly anyway. So, if he snores I can't get back to sleep once I have woken up (not usually his fault I wake). However, he has been snoring so loudly, he has been waking me up from my sleep. He disturbed a lovely dream I was having where I had met Tom Daley at a friend's house and DD was at her swimming lesson, I asked for his autograph for her as she would be gutted she didn't get to see him. He said he would stick around and I should bring her back after her swimming lesson and he would sign something for her personally. I had left to get DD from her lesson, struggled to get the car out of newly erected scaffolding and diggers that were in the way, finally on the road, all excited that DD was going to meet Tom Daley (she is a big fan, she is doing diving herself and would SO love to meet him) and I got woken up by the loudest snoring ever ever!

Add to this that DS refuses to stay in his own bed all night and comes in at some point after 2-3am. And sleeps ON ME. Or so closely into me I am falling out of bed, and he figits and fusses. So. When DH said he would sleep on the sofa, I said 'oh nononono! you have the kingsize lovely bed all to yourself. And DS ' DS will come and find me when he realises I am not in bed. And then I will tell him there is lots of space, he can have my side of the bed all to himself and he can cuddle into daddy. I did this the other morning when DH was really bad and snuck downstairs to get some sleep before the world got up and it worked a treat. So, ALL NIGHT! I might put a sign on the door for DD too. 'Do Not Enter. Go See Daddy xx'

So, I have made the sofa up lovely. All snuggled in. It's probably going to aggrevate my back, but I so need to sleep it's unreal. And nortriptyline is not a bloody sleep inducer like I was told. It has probably made it worse. I was thinking about it last night as I was awake, I think I wake at the end of each sleep cylcle as I wake around every hour or so.

Pavlov your surgeon sounds a lot like the ortho consultant I saw. No surgery needed, no interest given. The letters actually a good idea, I often think I should write things down before seeing someone as you often don't get chance to talk about everything that's going on, or they're simply not really listening or (and this might just be me) you forget certain things. So sending a letter before means not only have they seen your point of view and problems, but they have had a chance to think about them. If only it did work that way!

I have seen your feelings about your DH and sat nodding whilst reading them. I feel guilty that I might stop our potential future together and more immediately that he works full time, but also has to pick up all the slack from things I can't do. Which is why I often end up over doing things. To be honest I think my DH gets more fed up with having to pick toys up than the thought that we may no longer be able to tour Europe in a Land Rover camper van in 20 years time and actually, my feelings are not reflected in DH's at all. I'm trying to find the right words that don't sound like platitudes, but I'm sure you and your DH got together for the right reasons and those reasons don't change regardless of your back. I still love DH even though he has more chins now than when I agreed to marry him.

Thanks for the understanding, I'm going to give myself a good slap and have a bit of a rally now. I hope you get some joy from your consultant soon, keep pestering!

A night of peace sounds like it is much needed, even if it is on the sofa, I especially like the signage! I'm still up and not looking forward to leaving the log burner for my cold bed, especially as DH is on nights so I have no foot warmer!

Sleep tight!

You are right, I still love DH even though he snores like a jet engine TBF he doesn't always. DH and I have been together a long time - 15 years this year, and in that time we have finished uni, grown, moved areas, moved again, learnt about the world, become more wise, lost parents, bought a home, had our children, dealt with some negatives in ours lives, and some amazing positives, continuing to learn about being parents. So I guess, it is useful to see that is part of those journeys we continue to make together, some of which are amazing, some are easy, some are negative, some are hard. We call ourselves 'Team Pavlov (obviously not actually Pavlov, but our surname!) cheesy I know, but, it reminds us of our unity. I just hope it doesn't remain so one-sided with him giving and me taking, as that is not a team.

I hope you manage to get some sleep. I am not confident the surgeon will even read my letter, but worth just sending it in. He ain't contactable by phone so no other way of speaking to him. And I don't know for certain he is going to discharge me, I just am expecting it.

Meant to say also, sleep well when you finally prize yourself away from the woodburner

I am still awaiting results of tumour histology - up to two weeks from Tuesday gone, op date. Blocking off the possibility of having a sarcoma. Could be a fibro-something or other or a schwannoma. It's hard enough dealing with the recovery from surgery. I have to stay laid on my side but have a lot of pain in this position. Need to be moved from one side to the other 30 mins intervals or pain too much.
Some nurses don't have any sign of a smile on their face. Thank gd for those who do.
Starting to hurt now but don't want to hassle them. Can't turn myself as catheter and back drain need to be swapped under my legs as I turn, bars put on for me to grip, etc.
had gabopanton last night on top of other meds and slept for a mega z2 and 1/2 hours.

It's great to hear from you Goodness. If you are in pain or uncomfortable buzz somebody please. They won't know unless you do and smile or not it's part of what they are there for! Lying on your side sounds like it gets old really quickly! I've got my fingers crossed for you for the best results possible from histology and a speedy recovery, glad you grabbed some extra meds and got some sleep, it must make a huge difference. Have as pain free day as possible ((hugs))

Pavlov dh and I have been together since I was 17, so 15 years as well. I like to think we're well matched, we bicker and squabble, but also laugh, talk and love. So it's a solid, honest marriage. Nice isn't it? (not being smug, sometimes he's a total twat and possibly so am I!)

I went to bed at half 11, last time I looked at the clock it was 1.30 and DH came in and woke me before 6. Blurghh, more sleep needed, but I'm definitely not complaining as it was my own bed. Hope you managed some quality sleep.

I've turned over a new leaf and am going to be positive, so no more moaning and whinging from me. Honest. My pity party gets me nowhere so it's time for some joy. Starting with a trip to Aldi. Oh yes, the true path to happiness!