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.

Work aren't supportive at all. My boss referred me to Occy Health nearly a year ago. I've chased them for an appt a few times but not got anywhere.

I had a couple of weeks off at the end of last year and about 2 years before that I had a month off. My actual manager doesn't make me feel bad about being off sick which is good. But when I'm at work I'm still having to struggle with heavy beds, squatting/standing in funny positions for ages, trying to move women up the bed who can't/won't move.

Hi Pavlov :)

Sorry to hear you aren't faring much better :(

I've forgotten what I was going to say now, hang on need to re-read

oh yes, I remember now.

Have you invesigated applying for DLA? It would help with extra expenses like crutches, walking stick, private treatments like acupuncture, hydrotherapy, relfexology etc. It's tough having to relay all it all on paper, it makes you realise exactly how much it affects you and the people helping care for you, and it is not nice in fact it really got me down for a period.

I agree with previous poster/s who suggested a total rest. i know it's not easy and everything they tell you is geared towards keeping mobile but I was literally forced to bedrest by pain/stiffness for a good 3 weeks solid last year and again this year near the start for a week and I really did notice an improvement in my mobility (not necessarily the pain though).

And get that throbbing calf checked out just in case it's a DVT, dont' assume that any symptom you have is connected to the back shiz.

I posted an enormous post, epic. And then battery on iPad died, I closed my eyes before charging it, fell asleep for the second time today. Almost missed parents evening and collecting kids from after school club .

viva that is awful you are getting no support, you must push for oh as this condition is classed as a disability for work purposes so you will be covered under disability act. You must have adjustments made, they could be making it worse.

I am much better. Scale of pain is now around 5/10 where this morning it was 8/10. I am still hunched and it is weird, think the nerve pain thing is starting to do something as I can feel things are not right but the pain is less, does that make sense? It does not feel like it has fixed but numbed the pain, but that the pain is still there. Not gone completely either, just reduced. Right leg is now more fuzzy than it was, slightly less sore. However, walking for too long increases the pain, can only manage 10 mins of moving around really before I feel it starting to flare again.

foof I had not considered DLA only looked at disability in terms of work and time off. Did not think this would be classed as serious enough? Might look into it further but for now just want to get mobile again. I think it was you that told me about checking the calf for DVT a short while ago wsn't it? I will talk to the doc this week as not sure about work on Friday.

I keep meaning to join a scheme at work which helps me access privat acupuncture etc but have not done so, I will do it this week have to wait 6 months befor I can access but this is going to reoccur so worth it. Existing conditions are accepted too as not health insurance, it works alongside medical intervention already in place, and can fast track MRI scans and physio etc. I should have done it by now.

Is it seriously classed as a disability for work purposes I had no idea? Would I be able to tell them I can't work nights as night is a longer shift which I struggle with and it bugegrs my meds up. I can't take amyltriptelene if working a night as it knocks me out - then I'm in pain all night.

I am only just learning about the disability aspect if it all for work, but it is yes, OH needs to be involved for it to be identified as such. I will link you the other thread I have started to get advice, and the act I have been reading which helped me figure it all out. I have not yet had it defined as such at work, and I expect it won't be as simple as just saying it is and that is it.
But absolutely your job in particular needs adjustments to support you and reduce the risk of it getting worse! I would think that the night time working would be an issue, but I am not oh, you really need to get oh involved and your gp on board to say night working is detrimental to your health in terms of your back.

You know I haven't been given any advice at all on things I can do to stop it getting worse. Just assumed that what will be will be. A friend told me to do pilates to try and build up muscle strength but all the drs do is give me painkillers.

But I'm not sure if all the lifting/been bent over for ages at work is making it worse.

No way! Well, I would say, go and speak to him about trouble with night working, get it on record that you need these drugs to function, obviously you do or else you would not be on them. Get your concerns about struggles at work due to condition. Then push OH for them to sort their shit out, and insist on looking at this as a disability, with policy in hand if necessary. Do you work for NHs? At least with all this my employer will help me adjust, mostly to stop suing them for making it worse I expect. But then it is not difficult or expensive to help me adjust as I am office based. Maybe they would react differently if it cost a significant amount to make changes.

for you viva not much response but what there is useful, will link disability act page too.

definition of a disability as per disability act. In particular read p17 through to p25 there is an example of a woman experiencing sciatica due to prolapsed lumbar disc and it talks about reoccurring conditions that have breaks in the negative effects.

I am going to be a pro in this matter before the end of the month

Thanks for the link. Yes I work for the nhs. I should have been sent for a meeting with oh and hr after my last bout of time off as I'd had 3x episodes in 12 months. But either my manager never reported me (quite likely) or oh have lost the paperwork (also quite likely actually).

Pavlov, I don't know if this is relevant but I did a course with these people www.koretherapy.com/kore/index.php There was quite a bit of structural and muscular stuff in it (like osteo, massage, acupressure, etc) and I seem to remember that spinal problems often "mirror" so a problem on the left side in the lumbar region may reverberate and cause issues on the right side in the cervical/thoracic region. I think it is a standard theory in osteopathy but can't remember what it is called.

Let me know if this is of interest and you want me to dig around in my notes to see what it is.

fifty that looks interesting, would b v interested to read more, thanks for that link. In particular interested in the idea of back pain and toxic. Buildup, heard something vaguely about that before. Not thinking my pain is caused by it. But, I know prolapsed discs emit toxins/chemicals and maybe they have built up and increased pain levels. Like I said in my OP, willing to think outside the box and try anything alongside conventional medicine.

I would encourage you to apply if you have the strength to, but don't underestimate how much it takes out of you to apply, it's a bloody long form and of course you have to be pretty personal on it which is upsetting I get DLA for my herniation at l5/s1 and sciatica and related problems. I didn't even have a medical.
If it can help keep you living your life/working then it's worth it. If it means that you can use the cash to take a taxi in and out , get a takeout lunch delivered and save your strength for working hours for eg. It doesn't have to be spent on therapies, sometimes it's that ^ kind of thing that makes the biggest difference.
As you've researched too, once you've suffered with it for a year (I think?) you are covered by the DDA, but obviously your work need to be made officially aware otherwise you cannot then claim any discrimination should you need to.
Viva, I'd be definitely pushing for OH in your case as your work is messing with your treatment.

foof oh is it a year? I guess from diagnosis? They have been aware since the episode at Xmas on onwards, not before as it did not affect my work then, and I just had painkillers to manage and the times in between were just normal for me. It has been since Christmas that it has been constant, and I knew it would not be 100% better so I got OH involved immediately on my return. Does it count from then, or my diagnosis this month? I will talk to OH about it.

Very interesting about potentially getting DLA. I know what you mean about those little things that help, like, right now, DH is doing most of the housework, or trying to, but is way behind. At this acute period a cleaner would be useful, just to help keep on top of it, just the hoovering and stuff, and Internet shopping which I am doing, would pay towards the delivery charge (when I run out of delivery offers!), and very importantly, school meals. Normally the kids have packed lunches, but we have stuggled to do them this week due to lack of shopping, DH working and doing all the other prep, so both kids have had school/nursery meals this week, which is £4 per day in total. Thank you for talking to me about it. Can I ask, do you get the career or mobility part? I had a quick look on the direct gov website and there are two parts arent there?

Feeling much better today as I have done very very little. I find the the level of pain in both back and sciatic pain correlates to how much I do, so you are all correct about bed rest. I have been moving to stop stiffening up, but done hardly a thing today. As soon as I start to do something that involves moving too much it starts to hurt, and I go from almost straight to bent. Just cannot get fully straight, and when it starts hurting, it is not possible to get almost straight even. But, I do still need max strength of cocodemol to manage, which I am not happy about. I had wanted to reduce this by now, tried and no good.

From onset I think not diagnosis for the DDAct yes- I don't know much about it I have to say because I had to leave my work.

DLA you have to have been needing help for 3 months and expected to last for at least 6 months (sorry to say it but get your head around the fact it will ) You do not need a diagnosis, in fact they don't even care what's "wrong" with you it's all about what support you need (even if you don't get it, ideally what you need)
I get Low rate care and high rate mobility. it's important to read their wording carefully, it's not that you CANNOT walk a distance, it's that you CANNOT walk a certain distance without pain/discomfort. The meedja often get that part wrong when flinging accusations around! So for me I cannot walk more than around 100m without pain kicking in although that varies day to day.

I spend mine atm on everyday things as I don't work so it's sadly getting all lumped into the pot but when it was "extra" I used some to pay for taxis, online shopping, more ready meal type stuff as I was having a few too many accidents with balance whilst attemtping cooking/draining pots etc and burnt myself on my hands a few times, new clothing as have put on weight as a result of meds and lack of exercise and boredom eating new trousers as my leg swells that much I couldn't get any of my own trousers on, slip on shoes instead of laceups/buckles, going swimming/sauna when I can. things that you really don't think of as being extra expenses as a result of your situation. Little things that can mean you can conserve your energy for other stuff. it helps so much.

if you/Viva/anyone on this thread need any help or advice in filling out the DLA form should you decide to go that route then please PM me, don't go paying someone to help you with it, don't pay that benefits and work website for access, you could have my log in details, moneysavingexpert have a disability and dosh forum and they are bloody excellent.

foof you are an absolute gem, thank you for your guidance and support. I can honestly say I would not have considered applying, but then I say that, I have only just starting to get used to and understanding the enormity of what this is and means and only just starting to sink in that this is a disability that will affect my entire life.

I had a good chat with my actual line manager today, rather than HR. she has been off work due to personal reasons and returned yesterday. She has a disability herself, and said that as far as she understands it this would come under DDA now. I did not mention work but we talked about how it is going to affect life and she said that i will have not protection and adjustments under dds, and also said to think about mobility route of DLA at least. She said that I don't have to 'label' myself as disabled in order to qualify and need to support of DDA and the help a blue badge for example would offer.

I think, the very fact that I am even talking about this in terms of disability and DDA and DLA and that those around me are mentioning it before i do, including DH, as something i really need to consider, is a huge realisation that this is not going to go away. Not sure I am ready to face that yet..

Thanks for the advice Foof.

I don't think I'm bad enough to need DLA yet. I can walk the dog for 90 mins most day, yes I'm in a bit of discomfort but not enough to stop me doing it.

I haven't really pushed for the OH referral at work as i'm worried about future job prospects/promotions.

You'd be protected by the DDA though Viva?

viva oh thats not good, that you feel you should miss out on support from work due to loss of promotions. I know what you mean, and I know that in theory the DDA is there to protect, but I suspect that employers can find a way around that when it comes to promotions should they desire. As foof says, even if you are not eligible for DLA, DDA at work would still apply.

Its what you are saying about being able to do stuff. That makes me think I would not be eligible for DLA. On my worst days, I can't move or do anything without DH being there to help me, I can't walk without pain and can't make it to the toilet. But, on my good days I am almost pain free, and with relatively low level medication I am pretty much ok on those days. However there seems, at the moment to be such a varying degree in-between those parallels, where I have some pain and can do some things, but not as much as I used to, but more than on my bad days. So what level of pain do you look at in an the DAL? an average of it all? I am not sure. If I were to have a medical on my good day for example I could do a lot of the things they would probably want me to do. But if it was on a bad day, I would not be able to do many of those things. And the docs all seem to minimise it, despite one of the osteopaths admitting he has never suffered from any form of back pain, so he cannot have any idea what it is like but makes me feel like I am being a bit dramatic about it sometimes when they seem to think its not all that bad. But I guess they compare it to others they see, where it clearly is horrendous, so its relatively minor to them maybe?

I have been to osteo/pain clinic/whatever the hell this guy is I am seeing.

I am not impressed. I have come away in tears thinking that no-one is taking me seriously, and he has pretty much told me this is all in my head - I have a small disc prolapse and tear, that the other disc bulges and dehydration is 'normal wear and tear' and that clearly my stress levels are making the pain much worse than it really is. He said the prolapse is not 'horrendous' and that my neck/face/arm pain is likely that I had a migraine, which in turn made all the rest of my pain feel worse. He said he is not doubting that I have had a relapse, but that the magnitude of it has been increased because I am feeling stressed. He said there is no reason why I can't just get on with life once this period ends, including kayaking, and that normally disc prolapses fix themselves within two years (it has been two years and this 'episode' is the worst yet'.

I cannot compute it. That this is psycological as he worded it.

I stupidly mentioned my neck/arm pain. that is what did it, I guess he thought 'here we go, another one with mystery problems' I told him about it as I wanted some re-assurance it was not a bigger problem with all my discs. he asked if i grinded my teeth as that can cause facial pain. I said it reminded me of when I get a migraine and that indeed I felt I had a migraine coming on at first, before my back went, due to the culmination of the kids having chicken pox and DD breaking her wrist, and finally getting the all clear the day I started getting the neck and arm pain, put it down to that/getting a bug. But then my back went and I still thought it was perhaps weak due to the bug or something, but when the bug symptoms went was left with the horrendous back pain and sciatica and also the facial/arm symptoms. This is what I told him.

His conclusion was - you have had a lot going on and your arm/neck pain was probably due to how you are holding yourself due to back (but it happened before), that it was not phsyically possible to be linked with the lower back pain. And from that he drew the conclusion that I am stressed and this is making it all worse than it really is, that this acute phase it because of all the stress I have going on. He asked me if I feel stressed, i laughed and said 'yes of course' and he took that to mean generally, I had to clarify that i meant because of the significance of pain i am in, but he had already made his mind up.

He said 'it is possible that stress has in fact got nothing to do with it and that you have had an acute attack of sciatica'. WTF?! possible? what is that if not, with all the other stuff he has said, him saying it is all in my head? He also said 'i am not suggesting that you are making it up, or that the pain is not real, you do have a disc issue, i can see that on the MRI, so please don't think that, but we cope with things very differently depending on what other things we have going on' of course that is paraphrased as I don't have immediate recall, but that is the gist of it.

I am really upset. DH is like 'what are you so upset for? surely it is good that the diagnosis is not that bad after all?' 'you don't want it to be progressive do you? wear and tear is good isn't it? if you can kayak again that is good isn't it?'. And of course he is right. So why do I feel like this is not the right outcome. Why does it not feel right? or good?

Yes, I know in theory I'd be protected by DDA if I pushed things that far. However it would be very easy in an interview to say another candidate scored higher/interviewed better.