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.

well i guess this thread has run its course, but I will use it to get my thoughts out anyway.

I spent all of last night in floods of tears, and much of this morning, veering between angry, upset, stuck.

I have decided that, in actual fact, the osteo opinion does not make an awful lot of difference to the facts. the Facts are, I have a prolopsed l5/s1 disc, and other dehydrated lumbar discs. The facts are, I am in pain. I need medication to stop the pain. the Facts are this is an acute phase. and it will pass. and it will likely happen again. The Facts are this could be a better outcome. but, it could also be a much much worse outcome. Whether he considers this to be stressed related makes no difference to the Facts.

So, I am going to shove his opinion that this is brought on or significantly worse as a result of stress in my life magnifying/misunderstanding it or whatever where the sun don't shine. I have had significant stresses in my life, and not had back pain, or other pain as a result, other than stress induced migraine rarely. The only way I think being stressed would impact, is in that I perhaps take less care of myself and bend/lift more carefully. But, i swept a floor once this time and that could happen any time.

I have had, and still have all sorts of thoughts, which has included calling to rant at a doctor, but also to stop the medication if he thinks I am transferring emotions, therefore don't need it. A knee jerk reaction, and meant by lunch time I was in pain again, so tried really hard to think rationally about what I want. Do I want to be Right. Or do I want to be pain free? so i took my medication, as the osteo would not care much whether I take it or not and it will just make me feel worse.

Tomorrow, as I am feeling much better, i am going to my health club for a jacuzzi. I won't do exercise necessarily, but I might walk the length of the pool to get moving, then I will relax in the jacuzzi and have some bubble jets on my back and legs. Then if that goes ok, on sunday I will start some simple pilates at home, just 5-10 mins max. I will build my core strength back up as I worked so hard on this over the last few months. Then, if I am stressed/depressed/whatever, this will improve as I love doing pilates etc which will in turn lift my spirits.

Next week I will se my gp (well the other one mine is on leave) about pain meds to check how I am doing on them. I will talk in plain terms about the pain I am in/not in and I want to check the course of direction the osteo has planned for me. I want to ask about physio therapy and hydrotherapy and massage etc to help as none of this has been offered to me. None of it. I will do my best to keep my emotions out of it, as it seems that when emotions are involved with medical professions they make all kinds of assumptions that are not there.

I will, alongside all this keep an accurate diary of my pain, when it is worse, what helps, what makes it worse, where the pain is and when. Then when I see the osteo next I will simply hand it to him (or the gp) rather than trying, obviously unsuccessfully to communicate my fears, what pain I am in and when, and ask questions around it. It will also help me to see what is going on better, esp as i adjust medication up or down or increase/decrease exercise (it will also show if stressful times increase it).

so i have a plan. it is all out of my system (for now!).

and, to top off my good spirits, a lovely and kind MNer has sent me some lovely smelly Hemp cream and soap to help with pain. It arrived today and have used some and it is awesome. hard to say how much it has helped yet as I used it around the same time I took some pain meds . DH finds it funny that I don't trust the osteo but trust some hippy hemp cream! I advised him that I am not placing my trust for suitable diagnosis and support with long term solutions in this cream, unlike the medical professions.

Hurrah for plans and hemp soap although that is a new one on me - care to explain more?
I'd also advise maybe walking the width rather than the length of the pool

Have you been referred to a neurosurgeon to discuss surgical options?

foof the hemp cream and soap is some wacky lovely stuff that has been specially formulated for pain management through natural routes. you may or may not know the lovely MNer. I won't say her name as she has been off a while and name-changes so don't know what her current name would be. She is back on soon though when she gets internet (you know who you are!). I will get it and tell you the ingredients, but includes hemp as main ingredients.

No neurosurgeon. Apparantly, no trapped nerve at the time of MRI and this osteopath has categorically stated (quite insistently several times despite me not challenging his opinion) that I am not a surgical candidate. He said he is referring me to another clinic for 'rehabilitation' which includes Cognitive Behavioural Treatments. There will be no hospital referral. But, there will be. I am going back to GP to find out about the surgical route, not because I want surgery, but because I cannot see that CBT and pain management is all I should consider. I suspect this prolapse is worse than when I had the MRI 6 wks or so ago, this 'episode' is much worse than others I have had. The Sciatic pain and pins and needles have increased, and he just brushed it off like I was talking nonsense. He did not even acknowledge it. Because I stupidly mentioned being unwell first, and throwing up which started the face/neck/shoulder/arm pain - he said 'migraine, it is stress related' end of.

But, it seems that this is the primary care route, and not the 'spinal pathway' and we have reached a dead end in this course. So, if he is not giving me what I need, I will seek it elsewhere, but not right now. I need to just get over this patch first.

Oh Pavlov. It's shit, it really is when the drs won't listen won't/can't help. I've been back at the gp today close to tears because of the weird abdo pain I've had for the past year. We can't even work out if it's gynae or urology pain, though I suspect urology. The twat urologist consultant told me last year that I had an overactive bladder and I ought to wee less. How he worked that one out when he never actually asked how many times a day I wee I have no idea. There is no way I have an overactive bladder, I can go all shift without needing a wee. Gp says he is mystified by my pain when all the tests, scans, exploratory operations have come back clear.

They'll probably start telling me it's stress, psychosomatic soon. . I think it's a get out clause when they can't solve it, sort it out.....oh you must be imagining it, can't possibly be real. Grrrr.

Anyway, last nov I was in agony with my back. Admitted to hospital, couldn't wee, vomiting with pai , couldn't walk. This week I'm mountain biking, going down the water slides at centre parcs. You will come out of this acute phase and things will improve. I know I will have another acute phase in the future, but I'm hoping with exercise, pilates the acute phases will be less serious and further apart. Keeping my fingers crossed for you.

viva that must be awful! It is not nice feeling when you know something is wrong, to be fobbed off and for it to be Made out like its a psychological problem. I know i felt down, possily even a little depressed over the last week or two, but that is becausevof the pain and because I had just been told this won't go away and o can't kayak again. Does be think I am going o be happy with that? His attitude made feel so upset, as it has you too. I hope find a resolution for it soon. I have decided I will NOT feel that way again by a medical professional.

Hi Pavlov

Sorry to hear that you are still having such a hard time. It sounds like you need more medical help than you are getting, so don't be fobbed off! Feeling generally unwell is caused by the sciatica as the early stages are similar to an infection.

I saw a spinal surgeon last year and he explained that:

a) spinal surgery doesn't usually cure back pain
b) that the best surgical results are achieved from acute or chronic sciatic pain going down the leg rather than in the back
c) in most cases the sciatica is much better after 18 months (yes it really can take that long to heal completely!) but sufferers usually notice a big improvement much sooner
d) after a disc or discs prolapse even if you feel better within a few months, you will still have a weakness for a year or so and are at risk of further damage if you simply resume everything you did before the injury.

Don't give up on the kayaking, just accept that your discs need to heal properly first.

It's a good idea to see a surgeon so that you can get another opinion. I would also recommend seeing a physiotherapist that specialises in back problems.

mouldy that was a assuring post thank you! I felt that the bug and the back and leg pain were connected but did not on know how, so interesting that they might actually be connected.

The back is probably not the worst pain, I can feel that is mostly acute and will pass. It is the sciatic psin that is worse, throughout and now, it just emanates through everything, buttocks, legs, feet, and it makes the back pain feel even worse. Also good to know that it will probably go away, even if takes time, it is getting worse not better right now.

I am confused now though, if the disc is not pressing on a nerve, then why this acute phase of sciatic pain? What is causing the continued pain? And the back pain? Does the disc pop out a bit and go back in? The osteo boss whoever is, he said that it takes longer for the disc to return to where it was as it is dehydrated, unit does that mean in this acue phase it has come out further again? Can it make the tear bigger?

Also read that often docs check the MRI scan results themselves, rather than go on the radiographer report. I know that none of them have looked at the scan, just the report. Should I/can I ask to see the image and go through with them?

I don't was surgery of course I don't but I want to know if this is actual,t a problem or not as the osteo I saw this suggests it's no big deal. But it FEELS like a ver big deal.

I don't get how they can say on one hand you have sciatica (nerve pain) and yes say there isn't some compression of the nerve?!
Re popping out and going in - don't think so, but the way it was explained to me is imagine a jam donut is your disc, the bit where the jam oozes out, that's the disc goo,(like toothpaste conistency he told me) and it's that pooling out that presses on the nerve that causes the sciatica (I always thought a slipped disc was literally the whole thing slipping out of the joint).
I think you are well within your rights to request a consult with a nuerosurgeon. In fact i can't understand why they haven't already, it should be on the list of upscaling investigations.

Agree with mouldy, the surgery for releasing compression won't affect back pain - something I wasn't told at my initla consult, only on morning of op!(that got cancelled as was found to be pregnant sadly mmc 3 months ago) and that it can typically take 2 years for nerve to heal although in 60% of cases it won't really do much at all. I guess depends how compressed it was and how long left for, might be irreversible damage. This is why I am not going back for my operation now and instead trying to find ways to just get on with it.

foof no, i don't get it either. I am actually quite confused by the whole thing. I am going to speak to gp about referral to neurosurgeon as right at the beginning of al of this, the gp was going to refer me for MRI himself and said I would need to be referred to pain clinic as I would be under a neurosurgeon at that point. But it did not happen that way in the end. So, I will ask him to refer me now.

I am sorry to hear about your loss too foof

The worst sciatic pain will go (it really will!) after a month or two. Mine felt like an electric shock going down my leg then back up again so I can understand how awful you would be feeling right now!

My rheumatologist told me that the disc fluid is a general irritant to your body which is why you feel so ill after a prolapse but it eases once you start to heal. It's probably the cause of most of your pain if the disc isn't pressing on the nerve. That sounds like good news as you have a good chance of getting back to normal. You need to rest and look after yourself in the way that you would with any injury or illness to achieve a good recovery.

I think it would be helpful for a doctor to look at your scan. The sciatic nerve is huge (biggest in the body) so it's important to know which part has been affected. A physiotherapist can start you on gentle stretching exercises that will help you to keep mobile.
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mouldy oh that is interesting about the fluid being an irritant, that would make a lot of sense, as I have felt unwell, which comes and goes, and seems to increase as my sciatic pain increases.

has anyone ever had myo fascial release treatment? can this be used for back pain related to discs/sciatic pain? i have been reading a little about it and it seems interesting, and I wondered if this would be something to consider.

Hmm.
May I ask some advice?
I don't want to hijack but you guys obv know what you are talking about!!
Firstly,
:OP...I am so sorry things are so crap for you at the moment. I can't imagine how fed up of it all you must be, but your plan sounds very good to me.
I had a herniated disc last summer...I could barely walk. I did things I shouldn't have...I went on holiday with my children because i didn't want to cancel and disappoint them. I move house - twice!! (long story!) and it all took its toll.
The gp at the time gave me painkillers and told me to go back for diazepam if needed. I really didn't want that so didn't go back.
Things got worse. I was in pain all the time, even when I lay down. I have put on a lot of weight as I have been pretty immobile for a year now.
About 2 months ago I had enough...I went private through my Dhs company and saw an orthopaedic surgeon and had an MRI.
I have a bulging disc at L3but thankfully all per discs look ok.
The go did say last summer she thoug it was my L3 disc due to my leg symptoms.
A month ago I had a left spinal root nerve block.
I am trying to be positive and I am certainly in less pain now but it hasn't gone completely...I don't think it's worked :(
What else can I do?
Can an osteopath help me?
I am pretty desperate now.
Thanks

Badvoc, it can take a while to reap the full benefit from a root block (I've had two) so give it a while longer but do go back to your GP or seek specialist advice again if you need to.

My sciatica suddenly improved after about a year and by 18 months most of the numbness/tingling had gone (exactly as the physiotherapist and surgeon had said it would).

Pavlov Sorry I haven't been back sooner, just having a really hectic time atm.

I have had a look at my KORE course notes that I mentioned upthread but can't find the thing I was looking for about pain "mirroring" but I think, from memory, he said that, because of the way the vertebrae link, a twist one way at one end usually leads to a kink the other way at the other end IYSWIM. Can you imagine those hinged plastic snakes that kiddies get? Like this www.childofthe1980s.com/2007/08/16/wiggly-plastic-snakes/ Well he said the spine moves kind of like that. He said if the pelvis tilts one way due to injury, the shoulders tilt the opposite way as the body always tries to keep the head level. These are often small, outwardly not visible, tilts but they cause strain on discs, ligaments, etc and therefore cause pain and damage. If you can get a therapist from theire website it might be worth a try.

Have you looked at Alexander technique? I have heard of people getting help with back probs from that too.

You really have my sympathy, I had sciatica for 8 weeks and that was more than enough.

I a. Hoping to start yoga classes soon which I hope will help.
I now isn't early days but I am still so stiff and sore :(

That's interesting Fifty, in the last week or so I have developed what feels like a muscle strain that feels like it's under my right shoulder blade, and at it's worst stopped my right arm from moving as normal due to it "pulling" and the pain incurred. I'll keep an eye on it and get some advice if it doesn't clear in another week or two, jsut to make sure not a simple pull.

badhavoc how long ago did you have the injection? I have had it, it was very painful for about 4-5 days afterwards, worse than before, and then, after that I recall skipping over a raised garden bed to get across it, rather than hobbling around it. I remember stopping dead and and thinking this is IT! this has done it! I was sooooo impressed. unfortunately, it worked for about 10 days then slowly the pain returned. the osteo made a decision that rather than do another one, he would refer for MRI and another one has not been offered and I was too annoyed to ask at my last appt. However, I have read lots of research that suggests it takes 2-3 injections back to back to have full effect, and works in around 50% of people who have it. You can only have 3 in one year and some doctors to back to back and some space it out over the year. Talk to the doctor who administered it for some advice re this. Is it working at all? If it is not working, you do need to get some follow up advice, but as you will see from this thread, that can be slow going! good luck and stay here for lots of advice and frustration (from me!).

fifty I have heard of the Alexander technique, I should follow that up much more than I have, thank you for reminding me. Interesting about the transferred pain and makes a lot of sense if you think about it. I will also read up on that more too. maybe that is what caused my neck/arm pain too? I had one of those snakes as a child! Must get one for the kids...

I am going back to work on monday. I got to get some routine going again. But I am worried about working while in Gabapentin. On 300mg only and this is split 200mg at night, 100mg in the morning, will take the lot at night as of tonight, as it just absolutely floors me in the day time. Not even for the first two hours, it is after about 3-4 hours and for hours afterwards. the 200mg at night still affects me in the morning, and last night I forgot to take it, remembered at 1am, and boy this morning did i regret missing it. I could jst about function or keep my eyes open and despite being 'up' and 6am with the children (and going to bed at 9pm) they were late for school and nursery. Meant to leave at 8:30am and by 8:26 they were eating brekky, only DD was dressed and I checked the time . Luckily DH got up and took them as I could not think straight. How on earth am I meant to work like that?!! I might have to come off them and just deal with whatever pain there might be as a result.

Feeling much much better atm. Back is very stiff when I first get up, in the morning, and quite stiff every time I get up from sitting, but eases somewhat afterwards. There is always a nagging pain at the base of my back, and in the lower back, it is constant and only disappears with medication. Sciatic pain is better too, there but reduced significantly, gets worse as the day progresses though. I feel much less of a mess. But not sure if this is because of the medication and if I stop, would that all come back? Numbness as mostly disappeared, get the odd patch, from time to time, but less frequently, same with pins and needles, still get them, but not so often and they last for less time. I think I am on the mend (until next time as DH reminds me!).

pavlov I had it about 4 weeks ago. Like you I had a lot of pain at site for a week after and then it went. Cant say I am jumping about though :)

Not really noticed much difference tbh even though I keep trying to convince myself its worked and I am slightly better :(

Are there any things I could be doing myself? i.e. yoga, pilates, etc? that you have found helpful?

pilates was (and will be again) fabulous. It helped me feel like I was doing some good, i am sure I was, but this last lapse threw me completely and i feel like it has all been undone, or was an illusion in the first place as it 'went' so badly. But I definitely want to get back to it. Hoping next week.

I have myofascial release physio on the nhs for my own upper body chronic pain. I have to say that it has worked better than any other type of physio and I've had a year of it.

Oh have you?! do you think it would work for lumbar pain? I am reading about the Alexander technique, which I think is, basically, CBT (tell me if I am wrong there!), where the myofascial release seems to actually do something. how long did it take for some noticeable signs? how did you get referred on NHS? I am interested in this, still learning about it, but am open minded to the things I can try.

I had it in my neck. My nervous system has gone to pot so to start with he only did a tiny bit as I got dizzy but the muscles which had been in spasm for weeks or months relaxed. He literally just does tiny tiny taps which feel like the first flutters when you feel the baby kicking. I'm sure it would help release the muscles in your back. Here we can self refer for physio and I have a complex condition. My physio is a neuro muscular skeletal specialist. Not all physios do it as far as im aware

Can I ask for some tips on coping with working with back pain, painkillers, the fuzzy head and all that? I find myself in the position of not being truly fit for work, but having to go back. It's a desk based job. How do others manage?