Calling Lumbar Disc Sufferers...i need to ask some questions...

[PavlovtheCat]

Its me. again. if you are reading this you have probably read some of my umpteen posts about poor old me and my back. feeling very sorry for myself, and yet know so many of you have it worse than this.

Anyway. My back has 'gone' again. However, this time, as well as lower back pain, I have also had a pain in my neck/spine which has eminated into my head, across my right shoulder, and the nerve pain has followed it there into my arm and fingers. It reminds me of when you pull a muscle or something sleeping funny. And then as i have been thinking of this, I remember that I have had this a few times, but not ever connected it, just put it down to sleeping badly. I get a 'clicky' neck a lot too.

So, never gave it much thought, but as my back has been painful so has my neck/shoulder, and the pain in my arm and into my fingers has been at times almost as bad as the right leg sciatic pain, and it certainly feels the same type of pain.

so, given that my MRI has spotted 'several' disc bulges, could this be something that could be a problem higher up too? does that ever happen? could they be linked, or a seperate hypochondriac type problem? The MRI did not go that far, only did lumbar region.

The pain in my neck has subsided now, likely due to all the powerful drugs I have been taking, but the sciatic type pain comes and goes down my arm into my hand/figners intermittently, although nowhere near as bad now as my current sciatic pain.

so thats my first question. is neck related to lumbar pain? or, can it be? (i think I am worried it might be degenerative? this can affect all discs can't it?)

next is:

is there any complimentary treatment or therapy, or food/supplements etc I can take to support helping my discs go back to where they should be/get stronger/stop my back going again. I don't want this to keep happening, as it is affecting my life so badly now. I can't work at the moment, I can't clean the house, pick up my children (esp my 2.5year old), lie down with them. I can just about drive the car. I can't walk far without it hurting, stand up for long without it hurting, but surprisingly I can sit down for a while. I of course will continue with the usual route but nothing seems to be being done for my back that will help - injections not worked, acupuncture not worked, MRI shows no nerve entrapment (think the results might be a little different right now) so nothing surgically feasible. What else have I missed? other than drugging myself up on codiene and diclofenac?

Anything that can help, i am willing to try.

How did work go pavlov?

Hey denia thanks for asking. yesterday was very hard. I took very low level cocodemol and usual diclofenac, but it was not enough. I thought it would be easy, but it was in fact very difficult. My chair was not right, mostly as not enough meds to cope if I am honest. In the chair for more than 20 mins and I seized, then got up and was stooped. I felt embarrassed as I was clearly struggling. I felt people staring (its a large enough office), but also I had people hassle me for work literally the moment I walked through the office. I really thought yesterday I had made a mistake going back, i felt very overwhelmed by how much things have to change, like the doors are too heavy, and then my boss steams in citing disability and runs around getting the right people booked (external co) to adjust the settings to their lightest on ALL the doors (there are a lot in the big building) so that I can open and close them, insisted on carrying my water to my desk and my note pad to our meeting. I felt very silly and at the centre of attention. By the end of the day my sciatica was very painful, and I was fit for nothing in the evening due to both back and sciatic pain. I know my boss means well, but was not subtle in her concern!

So this morning I took 30mg of cocodemol and 1000mg of paracetemol a while before work, and walked in slightly straighter and less green in the face (as was commented on) but, i felt more out of it, I yabbered a bit more i think, and felt hot and flushed. and by lunch time I had to take some more, then I had to see a client (boss had agreed not to do appts this week but he turned up) and I was struggling to compose myself, but thought I was walking ok. Those who saw me yesterday commented on how much better I looked today (thought you were going to pass out yesterday, you looked terrible, came back too early etc etc), and those who have not seen me until today where very surprised at how much pain i seemed to be in. But all in all I was more myself, and despite pain, and goofing in the afternoon (it took me literally two hours to do work that would take me 30 mins as I kept losing track of what I was doing!)

Lots of advice, everyone has had a back issue . I realise very much that it is not as simple as going back to work, I am going to have to figure out levels and timings of meds to optimise my ability to do my job and cope with pain, and it is very different to being at home, I am more on my guard I guess at work, it is such a different environment and the meds seem to affect me differently, I guess, my friends know me well and vice versa, they know my pain and if I am not speaking well due to meds they do not judge.

I just did not ever imagine that my life would change so hugely. I cannot even explain it. It is so much more than pain. It feels like I am no longer who I am. My whole world is going to be so different. I cannot see through the fog of pain and back complaint to a time when this will not dominate any more.

Is it ever going to just fade into the background again?

and this sounds really stupid, but I feel myself sort of gurning. not full on, but I am chewing my lips a bit, sort of doing something with my mouth. I don't know if this is the drugs, or the pain. And, again stupid, I can't seem to tell where the pain starts and ends any more, it has sort of become a dull always there part of me, I wonder if I am just always in pain I have sort of got used to it and that is what my face tells people, as I thought I was doing ok, but even my hardened receptionist colleagues who give no sympathy lightly got me to have the closest interview room to see a client, and tried kicking someone out of their interview room as it was closest 'you don't need to tell us you are not well, we can see that' .

that's the drugs isn't it?

I hate being at work on painkillers. I am constantly second guessing everything and zone out of meetings etc. There is something screwed up with the system. Too many absences and your job is at risk yet benefits are not available and the medical system is too slow. I'm in one day at a time mode at the moment. I think the best and hardest thing is to stay off until you are actually fixed i.e. off codeine / narcotics. Its terrifying though because we are programmed to work through it.

Try and get chair sorted as soon as possible it really will help. The one they recommended for me sort of floats back and you can stretch properly. I have different issues but the chair has been a godsend. Mind you i'm still off this week with a massive flare up :(

denial i am on first stage disciplinary already, not surprised, 7 days is the trigger point, and I am at 12 just with this. I have had 3 days off sick in total in the last year with 2 x vomitting bugs (thanks children!) and 3 days at xmas due to my back going (3 weeks, but I was already on annual leave, plus bank holidays). Plus this. I have told my boss i don't really care too much as I know I have nothing to defend myself against. I am not a regular short term sick leave person and if my back was not a problem I would have 3 days/2 absences in total for the last 12 month period. She has now recorded this absence as DDA related but not sure that means too much. I am not going in guns blazing. they know what I am like, they can do their 'policy' shit, as soon as I have the strength and feel they are going too far, I will have the union in. I sort of think I should probably have them in at my first stage meeting, although this is a policy/formality proceedure, will remind them not to mess around with me.

I am not entirely convinced I should have gone back. I feel unable to do my job well, and I feel pressured to get myself back on form quickly. All these measures being put in place to help me work - having my files moved to a better height, doors being sorted so I can push/pull them open, manager carrying things, staff being told encouraged to do stuff for me, makes me feel I should be more capable than I am. But, it is done. I am worn out. I am not sure I can do work and family with this chronic pain. I am waiting for it to end now, this acute phase, but it seems to have plateued into where it is now. like this is as good as it gets.

The chair was sorted at last OH. OH said I should have xyz, I was given xy. It is a generic back chair with a lumbar area cut out at the back, and the seat is more molded, it tilts more easily than the normal chairs, but mostly it is the same as the others. I doubt very much that they will change it again. I have taken a cushion in to sit on as it is too hard and presses on my buttocks, which seems to in turn press onto my lumbar area and my sciatic pain shoots down my legs, I have been perched on the edge of it as it has hurt to sit properly. but the cushion has softened it. WSA woman has categorically stated nothing more she can do til OH rear their heads again.

I am sorry you are having a bad flare up as well hope you are feeling better soon x

gp appt yesterday. I did not bother talking about meds. i actually have a virus/bug thing and just felt rotten! I also burst into tears when talking about the osteo. GP thinks he is a jerk. Did not say as much but completely validated my pain and as I spoke about stress he finished my sentence saying 'you are stressed because you are in pain'. so he gets it. He explained my ruptured disc to me in a way I understand a bit better. he said it can heal, but it is like a slice cut on the crease of your finger, it starts to heal then you move your finger and it opens back up - he said this is the 'flare up' that happens as it tries to heal. He said it is possible to heal but that it will never be 'right' again. He said not to stress about the rest of the MRI as I can't change it/do much about it. He was that the osteo did not go through MRI in detail, or do any 'osteo' work on my back, whatever that is. He is referring me to hospital physiotherapy as they apparantly have access to better treatment and guidance. He said that really i should not even be going to the gym without proper advice on what to do and avoid, and I should not be relying on a gym pilates teacher alone to support my change of lifestyle. He has asked me me to hold off pilates until I can be guided by physio, although felt better about me doing it when I said the teacher has worked with others with back issues - he said that was just luck and not through medical guidance. He also acknowledges that the MRI talks about 'no surgical entrapment' rather than no entrapment' as I argued that I clearly have sciatic pain and have since christmas even before this 'flare-up'.

So, in that respect I feel more positive. At least listened to. He told me to go along to next osteo appt and if he continued talking rubbish just don't go back as he has done referral to hospital now It is a start at least, if not the neurosurgery path.

I just feel so silly. I am not completely crippled. I am walking mostly ok now so I feel like a fraud that there is not really much wrong. But I can feel it inside. I can feel the pain still in my back, my leg, and I am thinking 'does this hurt? really? or am I imagining it as I can walk ok now?' It feels like it is going to go at any moment. But, maybe that is because I know it could now? I don't know.

All in all, with my back, and this virus thing, I feel bloody rotten and fed up. And well, like a hypochondriac, always bloody moaning.

But. On the plus side!!! H&S have put in an application to have ALL the main doors changed from push doors to button activated automatic ones!!! how about that. I initially felt very odd that my own health issues would make that happen, but I think there are now a number of staff suffering from various disabilities that make the doors heavy to open so maybe its a culmination. It is going to cost thousands.

I've had wine but you are in no way a hypochondriac. You are a hero to keep going! Don't let the it get to you

Oh Pavola, you are having such a hard time. Glad to hear you are getting some support at work but it seems they are giving then taking, if they are going down disclipline route as well. Back pain at work is so hard to prove and it causes a lot of stress, no matter how severe the pain is, most employers dont really care, they just employ people to do a job and not interested that the environment doesnt allow you to do that.

Just wanted to say I am thinking of you. I keep being told it will get better but I dont believe it so I wont say the same because those comments do wind me up. But I hope you get the support you need. It is so hard.

All the best

I have started hydrotherapy which does help for a short time and allows some muscles to be moved that are usually like rigid boards

seeingstars thank you for your kind words, and to you denial. I am hoping the physio will give some roper guidance. I could do with some massage or some-one walking across my back or that kind of thing!!! Doubt I will get it.

RE work. I am quite annoyed about my OH referral. I had a referral, on my request, in January 2012, to support my return to work with guidance re chairs etc. At the time they requested a report from my gp only, not the osteo, and the report said 'pavlov has been suffering from back pain and has been referred to pain clinic for investigation'. that is it. I told them it was a suspected slipped disc, but not confirmed at the time. She took my word for it and I had a telephone consultation only. So, two weeks ago I completed another referral form, agreed wtih my manager to see if any of their input has changed now we have a diagnosis.

Roll on two weeks, I got a call yesterday from OH woman (private company) giving me an appointment with an independent doctor to 'assess' me, which I presumed would probably happen as this is the second referral. I expressed surprise that my gp has been written to and responded so quickly, and was told they are using my old referral notes from my GP and telephone conversation at the time, as the doctor will 'examine me' anyway and make a diagnosis!!! WTAF? So I told her that since the last referral I have had an MRI and the results back. She said 'oh well that is great, could you get a copy and take it to the appt?' I am quite annoyed because 1. I am not going to see this doctor for diagnosis, I have that already 2) I don't recall consenting to a medical examination (but need to check that) I only recall consenting to having my medical records accessed 3) they will have the diagnosis if they could be bothered to write to my GP or my osteo! 4) it appears I am doing their job for them! There is a wealth of information available from my medical records about my back that will give them more indication of what is going on than a quick look at my back and how I am walking/standing/moving. And it has taken two weeks to contact me when they have not even done anything regarding the referral in the meantime!

re disciplinary. It is 'policy' that a stage one meeting is triggered when you have either 4 seperate short absences or 10 days absence in total (full time, so ine is 7). Even if I had this one absence I would meet this trigger. It is so they can have it on record. So that is fine, they can have it on record that it is DDA then.

I think one area that I am lucky is that my line manager has a 'hidden' disability herself. She has Carpal Tunnel and RSI, and the impact on her life is horrendous. She has voice activated computer, and had a number of hours at work for additional admin to write up her notes for her. She says she struggles at home to do most housework and some days cannot move her arm. So, I think she understands that sometimes pain can be worse than it appears and also how it impacts on her ability to work, so I know she will fight my corner for me. Even if we both have not seen eye to eye in the past.

Had OH consultation! fabulous. Yet another slightly differing opinion on how to manage myself 'you must be as active as you possibly can, you must let this take you over, you must not sit too long, or rest too long, and absolutely don't lie down when in pain, otherwise you will weaken your back muscles and then you will be disabled'. so, despite being in pain, i got to keep going. bollox to that. I have had enough of being told that I must not 'give in' and have to keep on going through the pain. oh but a bit of pain management therapy might help. Yet, in the very next breathe, the MRI result doesnt sound too bad [he has not seen it] most people your age would have disc dehydration, it doesn't mean anything. well thats ok then. I will pretend that I am not in pain then. Just get on with it all.

And the guidance for work? don't lift folders myself, and take regular breaks. No shit.

guess this thread had ended. thanks for the support so far anyway.

I'm still here! Also been referred to occ health and hoping it won't be waste of time. Did you get the feeling they had just been briefed to get you back to work whatever the facts?

OH consult sounds like it was a load of bollocks, please don't follow the advice of 'keep moving' etc. I'd be bed bound now if I'd fine that. I think that's only true for very minor back injuries. And your GP is dead right, please don't do pilates, wait for the hospital physio to see you & advise suitable exercises (though you know I think you should be getting a surgical consult,not physio). Above from a generic pilates teacher is about as much use to you as that OH was, i.e. similar to a chocolate teapot.

Sorry the system is letting you down like this :(

Done, not fine, and advice, not above. Stupid phone.

Hey guys thanks for responding to my self pitying post. I have just read an interesting article from the guardian from 2009 i think it was, which talked about how the NHS was withdrawing surgical/injection options in favour of exercise and counselling. So that is why this is how it is - and it is cheaper. sort it out yourself love and when that does not work, deal with it. that is the essence of it all isn't it?

And yes to OH being about getting me back to work. He told me that if I was in a more manual job, he would be seriously doubting my ability to continue in employment, because, although there is a chance my back will 'fix itself' in terms of pain/relapse, it was more likely than not likely that this will reoccur. He said that at the moment he thinks I am fit for work, long term and that is what he is recommending, but this was all based on what I told him from what I could remember. He is paid to get me back to work and staying there. that is what he has done. He has ticked the box which says they cant fire me on medical grounds yet basically .

Has anyone got any understanding of IDET? I have been reading about it and it sound pretty ideal, and it seems I am almost an ideal candidate for it, if they hurry the fuck up. If they don't i will not be for very long. I really don't get why they don't try it with more people. if they really want people to keep working, and not stop work, or take time off long term, this hardly evasive quick recovering surgical procedure does just that. I dont know if it is available locally on the NHS, I will talk to my gp some more and push to be referred to discuss this.

I just don't really see how they can just give up on me medically. I don't mean personally, i mean, if they don't sort it, i could end up detoriating over the years and not working. I still have 35 years of work left in me. I am only half way there! It just does not make economical sense to not do it. Now they have the MRI. I know without, its just back pain that might or might not go away, but they know that I am 'more likely than not likely' to have a further relapse and each time, the episode lasts longer before I make a reasonable recovery.

It has been something like 5 weeks. I can't even remember exactly. But, I am now able to walk straight enough. And it feels like, this time, this is as good as it will get. It feels like it will go at any time.

And, this article I read, also said Pilates and exercise is great for preventative measures, less so for dealing with the problem. So while I agree it will help, I am surprised it is being peddled by the medical professionals as the way to 'fix' this.
Sorry, long, i don't really have anyone to talk to in RL who is not utterly bored stupid, does not give much of a toss, does not really understand how much this is affecting me/upsetting.

If I am not in pain, I am waiting for pain. Albeit low level again now.

That's shocking Pavlov, I can't believe that's policy, that's basically giving up on people as cripples even though there are viable treatments available.

Sorry I don't know the ins and outs of the processes there, I am not in UK, went private and didn't get to the stage of needing OH assessment for work here as luckily for my employers it all went tits up for me whilst on maternity leave and was sorted by the time I went back.

Pilates can only help as a preventative measure as you say to strengthen your core muscles to give your spine support. You absolutely should not do anything that in any way aggravates pain. Pain is there for a reason. Your average pilates teacher would not know what could hurt you before it's too late. You need to wait til an episode haas passed before attempting rehab.

Would going private be an option for you do you think? I had insurance but I think the bill for my consults plus surgery & aftercare was in the ? 10k region. A hell of a lot I know but it changed my life.

ok so not the guardian it was in fact the DM. so somewhat designed to be inflamatory, except, in my case it is clearly true. It is exactly what I have been told. Keep moving, exercise and have some counselling.

and they obviously changed policy slightly as I have had the steroid injection, albeit one only.

Those guidelines are only valid where the cause isn't known and the problem is probably muscular. That's not the case with you so you shouldn't be being recommended this course of treatment.

Very frustrating for you I'm sure.

it is frustrating, as is is the clear route they are sending me. they are hoping it will just go away. or rather, i will . they will learn.

Hiya how are you Pavlov? What's been going on?
I'm 24 days post op from breast surgery, had another post op infection grrrr, which I hope clears before my spine op (will be my 3rd spine op) in august. I'm really nervous for a few reasons. My general health isn't too good, I'm worried about the impact of another anethestic on my already weakened body, the actual surgery going through my abdomen as well as directly through my back and post op infections and recovery. The last spine op I was in hospital for nearly 4 months because I caught MRSA septacaemia and c diff.

Do you still not know what is wrong? When was last time had a scan?
Can you see another GP to refer you to a spinal consultant?