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)

matilda I am heading down now, the removal truck will arrive at the weekend it contains mostly pillows!

re: osteos - the only two I saw were fucking useless. Well, no, that's not true. One said immediately it was my disc, and he was right. But he wouldn't do any massage, manipulation or anything, although he did try acupuncture. He also told me that mostly my stress levels were causing it and I should do CBT to get a grip. He passed me to a colleague, who ordered an MRI and gave me a caudial injection, but still not massage etc. injection worked for two weeks. But, it did work, and it meant they knew it was most likely the disc/nerve.

My colleague, in my team, has been signed off for a further 3 weeks with back problems. She has been off for 3 weeks so far. It is suspected disc problems, but I heard rumours she had cracked some vertebrae without knowing what caused it so they are doing tests. Oh Dear. Poor thing. Despite me getting not a huge amount of sympathy from my colleagues, who were largely pissed off at me being off for so long and being there so randomly, who barely mustered the energy to get me a card post surgery until 4 weeks later when another colleague got a card sent when she was off sick (and they realised), I still can't help feeling sorry for her and wondering if there is anything I can do to help, send her a card to cheer her up, some flowers etc.

to all the new ones.

How is everyone's pain level today? i hope on the lower side. mine is about 4/10. I am not sure if the pain increases by the evening, or if my tolerance to it reduces. Either way, by 6pm I am tired and in pain and fit for nothing. Does anyone else suffer from poor energy levels? My back pain is worse at night. My back pain is worse than my leg pain, which is present, but bearable. It makes me think fusion wont work for me.

I am working my new hours. So, 8:30-1:30 I said yes? Let's try, Friday last week 8:30-2:15pm, Monday 9:am-5pm, tuesday 9:am - 2:15pm, wed 9:15pm- 2:30pm, wed 8:30-2pm, thursday 8:30-1:30pm (yey a normal day!) and today, swapped my morning for afternoon as there is a case I need to see and no-one is around to do it for me. So, not working out so far! I am leaving earlier today but not hugely so. But, I am getting the children from school/preschool. I am not less tired, no time for my physio, but I am at least being with the children a little more, so by the time 6pm comes and I need to crash on the sofa, they have not only just seen me for an hour maximum.

funny you should mention energy levels Pavlovthecat...

the more stiff and in pain I am in the less energy I feel have

luckily my job is one I can leave nearly on time, I think being delayed to leave often means I am very stressed and that makes my back sore

My osteo is v.good Pav, ultrasound, acupuncture and gentle movement in each session. He is the osteo for the RSC as well.

Back still shit though

Is there anyway of getting your hours sorted?

scone yes re working hours, as of yesterday - Working to Rule (industrial action). Well, apart from today where I am changing how I work, but still only my hours technically though working to rule means I should do my hours at the right time and if there is noone to cover, tough. But, in reality, I just can't do that. The person I need to see is likely to be very angry about a few things, it's a friday and might generate more work, I can't do that to a colleague.

I probably need to see a private osteo. I saw mine through primary care route on NHS and he just ticked boxes mainly. I really need a good massage. Just because it will be lovely at the time more than I think it will fix anything

I am still in bed. I have had to do some chores online (bills, not shopping!) had a bad night's sleep, back hurts and I am hoping if I stay in bed long enough DH might bring me up a cup of real coffee not the instant muck I have had a cup of already I don't think it's going to work, he has been back from the school run for an hour and no sign. My stomach is rumbling, so i need to get something to eat. Toast is definitely too much to expect...

Hi all. By coincidence, after anti's link on Alexander Technique we had a teacher of this running a session at my Pain Management group yesterday. Well, whilst clearly not a cure for injuries like ours, it sounds fabulous. We did a lying down activity just like this

www.imogenragone.com/self-help/constructive-rest/

It's was great. Even the most negative people in the group loved it. What's not to love about lying on the floor twice a day? Do try it with the guided talk on.

Anyway, as part of this whole thing we can be referred to her for up to eight one to one sessions. Free. Sadly there is a waiting list but I'm def going to try it.

Thanks again, anti for the link.

pavlov, how generous are you? I'm thinking you kindly gave your employers six free hours this week. I hope you are keeping a record of these hours. You either have too heavy a caseload(surely not?!) or are really quite inefficient . I sympathise, though, it's hard to ask for a change of hours and then say it's not working.

I agree 100%about pain increasing through the day. I imagine there are lots of factors. Worth trying the lying down thing? You only have to swap the sofa for the floor.

I also so agree about lack of sympathy for back pain. I got almost no cards etc from work. In fact none at all until my first op five months in. A friend in the same department recently has early breast cancer which I know is shocking, but my god she was deluged with cards, gifts and flowers. I love her dearly but couldn't help feel slightly miffed.

Re massage, yes it's great and I love it but very temporary effect. Sound like physio and osteo are really similar when taking this approach.

Have a nice weekend all. I took my fIL to hospital appt this morning so will be demanding full kudos from DH all weekend. Except he's at a lovely lunch today, rugby tomorrow then golf Sunday.

matilda I do keep meaning to look further into the Alexander Technique, but always uncertain about handing over hard cash to people that I don't know for sure are any good. But, fab you get a few sessions to try it out! I will take a look at that link, give it a try.

I worked an extra hour yesterday. Yes I am recording the hours and absolutely I will take them back, but, not sure when that will be as I haven't got the time and I have to take by December as otherwise I lose it! I am at capacity with my workload according to stats, but those stats are not accurate. I am at 102%, and we are given 5% either way (never the other way ). But that is for fixed timings, so for a client who I see weekly, I get 2 hours a month (that's not fixed, depends on how risky they are!) but, yesterday I saw a client who has just come out of prison homeless and I had to pull out the stops to get him housed at 4pm on a friday (public sector winds down at 3pm! shuts completely at 4:30pm!), so I spend 2.5 hours dealing with that just yesterday, plus the first few weeks are more like an hour a session so that's 5-6 hours for the first month, but I only get 2 hours. And, if someone is monthly, I get 1 hour, but if they need to be recalled to prison for example, the paperwork alone takes 3 hours (to write, get signed, get sent off, get approved), plus the work that leads up to it, so probably 6 hours of work. So this week alone I have recalled someone to prison and sorted housing for someone leaving prison who is homeless, that means 12 hours of work (oh actually more as recall generates further paperwork down the line) this month that my caseload will only show as 3hrs. that's even before looking at reports that take 4 hours including researching info that I get 2.5 hours for (probably 3-4 of those a month), and other reports that I don't get any additional time for that take 5 hours! I suspect my 102% is more like 130%+, but that's the same for all my colleagues.

I'm so not good at working to rule , none of that probably makes sense to any of you !

sounds fairly typical to me Pavlov

I think the only difference where o work is manager it's supportive realised system is broken and absolutely supports clawing time back as flexi or toil.of course that just generates a backlog...

Oh, it makes perfect sense. Long years in the NHS to learn the mysterious ways our managers think.

If they decide a task, originally taking 2 hours will now take 15 minutes there is only one conclusion when it, guess what, still takes 2 hours. You are uncooperative and inefficient.

Glad to be out of it in some ways.

denial yes exactly. We cannot accrue toil that does not match our caseload, unless of course there is specifics that result in work piling up, such as me this week, and we have to take it by the following month or we lose it. I make sure I never have more than a couple of hours toil accrued, but some staff, those in public protection for example, they can accrue 30 hours in amount and it's just no possible to claw that back in one month, that's almost a week. Largely the local managers support taking toil, especially my last manager, she would insist I came in late the following day if I had worked late, but they are under pressure themselves to achieve targets.

I think it's even worse in NHS for goodwill of colleagues never being clawd back than it is formed sector of work. I am almost done with my goodwill. But, not quite, as the people that suffer are always the clients. I will try to leave early on Wednesday next week!

Am in a lot of pain today. I bent down to lean under the bed and Hoover, and my back popped, a slipped and smacked my head on DDs bed. Ouch! Then, I coughed a hard cough while on a walk and had nowhere to hold on to, DH was howling with laugher, apologising alll the while, but laughing nevertheless. And then, I sneezed twice in a row and my fucking work that has done it good and proper now. Leg pain is really stinging.

I am not sure it's my disc. I mean it's obviously sciatica, but, it's in both legs where it was not before, the pain is constant stinging, aching, tightness, but it doesn't feel the same as before, no pins and needles, or numbness, just pain. It makes me want do cry most of the time, it's not horrendous,4/5 pain wise, but relentless.

The pain clinic called, after my GP refereed me three months go, and chased it again 3 weeks ago. They called, spoke to my DH in Thursday, as I was at work, and said 'we have made her an appt for 1:30pm on Tuesday as we have had a cancellation, can you let her know please?' DH said yes, he said he was confirming on My behalf that I will definitely be there, she said that's great, all booked. I called to find out location yesterday and she has given the slot to someone else as I had not confirmed that I still need treatment. I called less than 24 hours after DH spoke to them and she didn't say I needed to call. Good job I did,as there was as no appointment for me! I now have to wait until at least middle of December. I lost my cool and she will try and email physio for me. I know that trick to get me off the phone!! Grrrr!

I have lots to do says DH is now at work, and we have friends coming over for dinner. I need to assemble the lasagnes he has made the sauces for, do roasties, tidy the front room, put some washing on as it looks like we dont ever do washing at the moment. All I actually want to do is have a long hot shower and snuggle on the sofa with a hot water bottle

I bet you can't understand that post though, given the horrendous typos! Got to love a tablet for changing things incorrectly!

He laughed?? Hope he will have plenty of time to think that over later when he's washing up the dinner things. I do hope the lasagne is well adhered to the dish. How you will chuckle..

He did too matilda I put my feet up when he got home

I ran today. Ok, I didn't really run, I played footie with DD and DS and did some basketball. If I remind you they are 7 and almost 4, you will see the level of basketbal and footie l I participated in . but, I shot some ball into the goal, 'ran' hobbled away from DS and chucked some ball in the air. It. Really. Hurt. But I didn't show it, the children wooped and squealed with delight as we played for over 30 mins, before they ran to the swings. DD said to DH when he came home from work today 'mummy ran! she ran!'. It means so much to them. I never ever thought I would struggle to play active games with my children . I was going to be the one out there with them every day doing different active things.

DD was so funny though, she is coming into her own now, developing her sense of self, and she is so sporty! She jogged to the park, telling DS off for running, not jogging, and not pacing himself! she had her full garb on, tracky bottoms, tracky top done up, water bottle in her hand, jogging into the distance. She is so like I was at her age! and older too.

Now look at me - in bed having taken 30mg codiene/1000mg paracetamol, 500mg napraxen, and contemplating taking some diazepam for the muscle spasms and suffering from 30 mins of gentle play with my babies in the park

Hi folks. I had my appointment with Scoliosis specialist today. He was lovely.

X-ray showed that although my top curve was fused 22 years ago, my bottom one wasn't. So, I have 2 main issues - a 52 degree lower curve which is pushing my body to the left and worn discs, especially at one side.

He is referring me for an MRI scan. He assures me that since the rod has been in my body for so long, an MRI is not dangerous. He said if I felt it vibrating, they would stop the MRI.

I've also to get a CT scan to see if the broken rod is somehow irritating something and causing my upper back pain.

Hope everyone is having a nice evening.

Hello all,

Bumping for louey.

Hope you are all doing well. I'm having a combination of good and bad days. I could do with a week off everything but even when not working and having paid help, it just doesn't happen. I need to learn to say no.

Hello all, just wanted to update and to say how helpful I have found the Pain Management course I'm doing. Now done seven of eight sessions. It's run by our local hospital Pain Clinic and led by a psychologist and a physio.

Lots of different conditions, all in pain. Our original group of 12 is now 8, so clearly not for everyone.

The emphasis is learning to manage our lives with pain, accept, pace and most of all keep active and engaged. Lots of mindfulness. So no cures but my god, as the weeks have progressed there has been such a shift in the attitude of many of the group. It has also led into other pathways like the local authority exercise programmes for the disabled. So much on offer. So many relevant and interesting people brought in to talk to us.

I am hoping to be referred into the Alexander Technique programme which is free and one to one. Also getting one to one counselling with one of the psychologists to help me deal with certain aspects of my situation.

Anyway, just reporting back in case anyone is considering or interested. Most gps either don't know about this or are not up to date about it. I just wish the course was longer and I never thought I'd be saying that.
Hope that helps.

Matildathecat - thanks for you summary

I know if I would let my pain affect my attitude I feel miserable and very negative.

Mindfulness is a great technique to learn and practice by anyone anyway.

I've found this thread extremely helpful as well.

Thanks Matilda for bumping...

Coming in for some advice and support. My story is that I started getting lower back pain, mainly on the left, in June. At first I put it down to doing everything around the house as DH was laid up having had an operation on his foot. Got referred (privately) for physio which helped to begin with but the pain kept coming back and then got significantly worse.

He wasn't happy that it was just muscular so referred me to a consultant rheumatologist as it was often worse in the morning and he thought it might be inflammatory. Rheumatologist did bloods and an MRI and the MRI showed degenerated discs L4-5 and L5-S1, bulging and impinging on the spinal canal. Bloods came back fine but he still thinks that there is an inflammatory component as it is bad overnight and first thing. It was eased by exercise to some extent.

He gave me naproxen and a PPI to take before bedtime to "break the pain cycle". This worked for a couple of weeks, although the pain didn't go away completely.

The past few days though it has been horrendous, about 8/9 out of 10. Pains going down the back of my bum and into my legs. Today my legs didn't feel like they belonged to me.

Randomly, my GP phoned up on Monday night as I got all the correspondence and test results sent to him. He said that he thought I probably needed more pain relief than one dose of naproxen and has given me some tramadol to take first thing. That didn't do a thing this morning but I only took 1/2 a tablet. Will take a whole one tomorrow.

I've started pilates (done 3 sessions) and I'm doing a 15 min mobility programme in the morning which I've just started. However, I can't carry on with this level of pain for much longer. I've got 3 DCs - DS3 is 2.5 and needs a fair degree of picking up cos he is a stubborn bugger who refuses to do what I ask him to and I don't always have help as DH often works long hours.

I used to run, a lot. I did the London marathon this year and I really miss running already. I have been told to stop and switch to non-impact sports but I can feel the weight piling on already - its so depressing.

I am not sure what to do - the consultant said the next step would be epidural injections and to see how it goes for the next couple of months. I definitely need more pain relief though so I can see I'm going to have to see the GP soon.

That was a bit epic - sorry!

Hello, I wonder if I may join in? I've met Matilda and Pavlov on other threads.
I have struggled with back pain (including sciatica and numbness in feet etc) on and off for at least 2 decades, but have usually managed it with visits to osteopaths and chiropractors. I started with a new chiropractor several months ago after recurrence of my upper back facet lock out ( and arm weakness/ pain etc). Their philosophy was regular adjustments to try and reduce spinal compressions (of which I have loads) and did warn me it would take a long time to stabilise my back. I thought it was worth a try as so far it has always just been fire fighting (limping from one crisis to another- literally). I also hoped for improvement in my general health (I have ME and POTS which limits my activity a lot!) I also restarted pilates, working up the levels some months back . Well now although my upper back is mostly behaving better, I am getting lower back trouble again, with sciatica, numbness in feet , pain and weakness in my legs, back, shoulders, neck and hip pain. In fact there are few areas of my back not playing up now! I had better say that my general health (ME) is somewhat better, - so perhaps their theory of decompressing the spine improving neurological function is right!
In all these years I have mostly avoided the GP who was of no help ( go to bed and stay there attitude of the 1980s) when I first developed difficulty as a young adult. I knew of two other young adults who had had unsuccessful back surgery which left them very much worse off and frankly didn't trust a surgeon or GP near me!! I am wondering if I should now ask for referral to - well someone in the NHS. Does one see a neurologist? Has treatment got any better? Am I still wise to avoid conventional medicine? Is their better pain relief than co-codamol ( I can't take most anti-inflammatories)

Sorry Louey, I did not see your post - wasn't ignoring you! It must be very tough with 3 little ones! I struggle because ds (my only) although 14 has autism and learning disability and is very stubborn just like a 2year old! At least I can say you are 14, you can pick that up yourself! I have been out of sport (I used to climb - not run for- 14 years I guess- except after ds who can speed away when upset as if trying for a record) for 5 years now ( due to ME) and found it very frustrating at first. I hope the specialist comes up with some help. Several ladies from my pilates class have said how helpful it has been for back problems but I have no idea if it is suitable for all back problems - or yours in particular. I thought it was helping me too. Perhaps mine is just a blip, and I could do with better pain relief so I can sleep!!

We posted at the same time I think Magso!

My DS1 also has autism - he's 6 (and a twin). Rarely needs carrying now but does have a habit of jumping on my back without any warning. I am trying to train him that he can't do that but he is just being affectionate.

My FIL has back pain, just had an MRI and is being referred to a neurologist - he has a lot of symptoms in his legs so I'm guessing that's why. I was told that my next stop would be an orthopaedic surgeon. But that was in the context of doing epidural injections. I guess your GP would (should) know who the most appropriate person is?

Really interested in what pain relief works for others as thus far, nothing has really helped me.

Ah- Ds is an energetic surprise jump-hugger too! He loves the sensory input- I do not. I'm still trying to train him along gentler ways!

Well i have had the MRI, and wasn't that fun. Nope. Fucking hurt laying still for that long!

Anyway, obv, the results haven't made it to the doctors yet, but my osteo asked if I would get a copy of the images for him to look at. So I did. And the following day when I saw him he said "Well. Very interesting images."

Apparently I have a severely central prolapsed disc at L3/4. And not normal facet joints (!). He has very sternly told me that I am not to attempt to do anything interesting as apparently the disc has hardly any jelly left in it (?) and the casing bit has shifted completely towards the central cord and is pushing it out of place - hence the pain.

So now I sit and twiddle my thumbs and wait for a referral to a consultant.

just marking my place as i lost you. I will come back and say hi properly later.

yama I can't beleive you have a broken rod and it's not been removed! It sounds painful just thinking about it. I hope the MRI shows that something can be done to help you. Do you think you are going to need to bottom curve fused?

matilda I could do with a bit of mindfulness. I am still struggling to get my head around this being permanent. It can't be. I am not sure if I am still in the 'denial' stage of bereavement model or 'anger', I flit between the two, then move on to 'depression and acceptance' but then back out into denial again!

Magso hello, sorry you need to be here, but you are very welcome. louey you are also very welcome. I am going to re-read you post and respond to some of what you have asked in another post as otherwise I will end up with my notoriously epic posts!

Me - been off work most of this week. Just can't get my back stable. I get myself back on track and it all starts to feel like I am going in the right direction, then it 'pops' or I twist and it all goes wrong. My leg pain is not horrendous, but my back keeps giving way. If I cough (still have a lingering cough from weeks ago), it causes SO MUCH pain, and I fall down unless I crouch first. Sneezing lying flat is not a good idea either. That sent pains through my back and into my legs and it was agony. I have lost most movement forward, backward, sidward. Although, I can walk, I have to do it gingerly as otherwise it's either painful or it will pop and have me on the floor.

I do have an MRI on monday though, as emergency. Does anyone know the process of getting results from this? GP talked me through the results last time, not thoroughly, and I only got a simple letter from lumbar physio guy who requested it, saying yes you need to see neuro now. Seeing as neurosurgeon requested it, will he just write to me and say 'yes I am going to operate, stuck you on my waiting list' or 'no, go back to your gp'. depending on the outcome, or will he ask me to go in and talk about it? Getting an appointment with him is like gold dust. I am worried it will be dragged out for more months.

Also, matilda can I PM you a question or two about work stuff and disability?