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

(217 Posts)
PavlovtheCat Wed 13-Jun-12 22:21:24

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?

<Sigh>

Anything that can help, i am willing to try.

FanjoForTheMammaries Wed 13-Jun-12 22:26:13

Can you feel your shoulder muscles and check whether they are tight? I have muscle injury to neck and that makes muscles spasm and squeeze nerve down arm. GP said if disc related it would be very painful turning head. I was also concerned as have disc issues in lower back.

Labradorlover Thu 14-Jun-12 08:35:11

The neck could be refered pain from the lower back. When I'm at my most sore the whole of my left side hurts. I've got buldging discs and damaged ligaments in my sacroiliac joint.
Have you tried Amitriptyline for the nerve pain? And ask doc about pain management.
What I found helped most apart from drugs, was exercise ( very gentle build up ) to make my hamstrings, bum and stomach muscles as strong as possible. Accepting the pain, rather than using my energy to be angry at it, also helped, but took a while. And I still occasionally get pissed off when I hurt. However, 13 years down the line, I'm more fit and active than I thought possible.

PavlovtheCat Thu 14-Jun-12 09:00:16

fanjo when the pain was in my neck/shoulder it was painful to move my head, really hurt, but not now, although my neck still really creaks. I tried to feel for muscle spasm and could not, but does not mean there wasn't anything. I did not mention it to emergency doc at the weekend (when my back went again and my drugs were not strong enough to help) as I just thought i felt like a hypochondriac with all manner of different things wrong. I will keep an eye.

labrador, good to know it can be transferred pain. I mean not good that I have the pain, but good that it might not be additional disc problems further up. My nurse friend has suggested Amytriptiline for the nerve pain as the next step, GP has not mentioned it, I will go back for a meds review I think. I joked with my friend that as it is also used for depression it might kill two birds with one stone!

re learning to deal with it. I thought I was. I had a bad acute episode at xmas which was the start of the diagnosis of disc problems, as i had acute episodes before, GP gave me drugs, it sorted itself out, I carried on not thinking much of it. At xmas it was much worse, took a lot longer to get over it, and has never fully gone away since (where other times, I went back to 'normal' although did not realise that occasional twinges in my leg was sciatica, i ignored it). Once I was mobile again and had been given the ok by the osteopath to start gentle exercise, I joined my local gym end of Jan this year, started to swim, and once the pain was mostly under control I built it up, did walking on the treadmill, used the cross trainer, and most effectively started Pilates and Body Balance (which I love!). I think I have helped to avoid some further acute episodes by strengthening my core muscles, as there have been times my back felt like it was going to 'go' and a day of rest sorted it out.

So, this new acute pain has floored me, and in terms of mentally, screwed me up. I feel like I am back where I started in Jan (i know I am not, i have some idea of the problem now, I am fitter), but I am, as you say, angry. Not sure who with (well no-one). I am frustrated as I can't do what I want/need to do. I am tearful. My DH is pissed off (he says not, but he is not a carer!), my work are likely pissed off especially as we have had chicken pox x 2 and a broken arm in the space of 5 weeks. I just can't see that my life is going to improve further than expecting a period of 6 months with minimal pain that flares on the odd day or two, then a period of 1-2 weeks or more, unable to function.

Has anyone tried meditation to help deal with the emotional/mental side, to find some peace/acceptance with their lot?

PavlovtheCat Thu 14-Jun-12 09:01:17

labrador and yes to the pain being on one side for me too. I have some left sided nerve pain, and a little hard back pain in one spot there, but it is mostly and very prominantly the right that is the problem.

I was at my GP's yesterday and she said the neck pain that I have is probably transferred from lower down.

I really empathise with you, I have permanent nerve damage from a herniated disc and had x3 lots of emergency surgery.

I am left with residual pain and was very tearful yesterday for similar reasons to you, I feel like a nuisance, burden and as if dh has an 80 year old wife.
It has affected the family so much and the pain on top of it makes it all pretty crap.

My GP suggested ADs, but I am not sure as I think that my response is quite reasonable given the situation and it would be like papering over cracks.

Has surgery been suggested for you yet?

So sorry to hear that you're in pain Pavlov. I don't have any useful tips or advice as nothing has ever reduced my back pain but this "Accepting the pain, rather than using my energy to be angry at it, also helped" is really good advice.

Toughas did your GP suggest ADs as they think you are depressed or as a painkiller? Amitriptyline (sp?) is an AD but Ibwas prescribed it for a while as a painkiller. It might be worth a try if you haven't already. smile

thejoyfulpuddlejumper it was suggested as an antidepressant , I have a carrier bag full of tramadol , gabapentin , morphine patches etc for the pain but there is not much more that can be done for me now other than spinal fusion.

It definitely sounds as if pavlov needs reviewing though.

Fair enough then, I just thought it was worth mentioning. smile You have my sympathy, I have been through all those painkillers too (no surgery though).

FanjoForTheMammaries Thu 14-Jun-12 09:48:09

i am on a tiny dose of Nortryptiline for nerve pain and it really takes the edge off. A higher dose knocked me out a bit too much but worked really well, like permanent infusion of painkillers

PavlovtheCat Thu 14-Jun-12 10:12:07

tough oh that sucks! I know what you mean about not wanting ADs because the reason is a bloody good one. I am in two minds, well, I am not, but DHs perspective is very different. He feels that depression/feeling down is a symptom of a problem in the same way as sciatica/pain, and therefore ADs is treating that feeling, the way that other drugs help the other pain. He is of the view that if we deal with the emotions, it gives us a break from feeling so terrible so we can evaluate things more clearly. I see his point but would be reluctant if suggested too.

tough i have my next osteopath appt to discuss MRI results on thursday next week, could not get it brought forward (I had one last week which I had to reschedule, wish I had not now). The head honcho osteo called me with MRI results saying there were 'several disc bulges' but that there appeared to be no nerve entrapment, so he made an appt for me to see his colleague/my normal osteo again to discuss the results in detail/next steps. He said surgery is not an option as won't achieve anything. However - at this moment in time, I would say there is a trapped/pinched nerve as sciatic pain is constant, its just whether it stays that way once this acute episode eases off. I don;t know yet, why or what discs are bulging/what extent. I am almost certain there is something going on with sacroilliac region as pain, esp when acute pain eases is low down at the base/around backside, when acute it is there and higher up.

It just all seems so hopeless in terms of long term outlook, although it seems significantly better than where you are right now.

Iamseeingstars Thu 14-Jun-12 10:14:52

Pavlov I fully feel for you. I am going through the same myself and getting very weepy all the time. Got to the point of what's the point., my life is so difficult to cope with and I can't do anything for myself. Family are getting fed up with me now because it's gone on for so long. My pain keeps moving so it's probably referred pain.
Painkillers don't work or ease the pain. On strong opiates, patches, morphine and other stuff? I get conflicting advice from doctors, hospital, physios etc so I don't know if I am coming or going.

I can't offer any constructive advice but my thoughts are with you.

For other members this post is about Pavlov, not me, so I would appreciate it if you could stay focussing I Pavlov. Thank you

Oh, is that a dig at me sad

PavlovtheCat Thu 14-Jun-12 10:19:44

the whole meds thing is a pain in the backside (excuse the deliberate pun!). Gp told me he was referring me to Pain Clinic at the hospital, but in fact referred me to an osteopath, which has been fine in terms of trying acupuncture (there and then as he is qualified) and having steroid injections (his boss does these) and they referred for MRI. But, as they are not my GP they cannot prescribe medication, so have told me to speak to GP about changing/reviewing meds. Problem is, my GP has little idea about back pain ('you can't herniate a disc by sneezing/coughing' for example), and the pain relief he gives is the standard 'someone is in pain' medication. I don't know how he will be able to guide me on what I need, or agree with my own suggestions, for specific back related pain, such as amytriptline, or others. I could really do with seeing someone who can do the whole shebang.

PavlovtheCat Thu 14-Jun-12 10:32:29

I don't mind this being a sharing thread. In fact, maybe that is what we need, there are other collective threads for various things and I talk with people on the whole waiting in the system for appts diagnosis etc which is great as the slowness gets me down. May we should have a thread for coping with back pain and alternative coping methods? Maybe there is one already and I have missed it.

Once upon a time we would have to drive to a support group, and now we have it at the tip of our fingers, so lets share, positives and negatives. I know when I feel down like now it is good to know others understand. and i am happy to offer that same support to others.

brew

PavlovtheCat Thu 14-Jun-12 10:33:19

iamseeingstars sorry to hear you are where I am now.

Iamseeingstars Thu 14-Jun-12 11:39:39

Thanks Pavlov. Just looking at photos on the web about the spine. Really should stop looking at the Internet.

Tough - sorry not a dig at you or anyone else and I am sorry if I have offended you. I just didn't want to take this post away from Pavlov.

Tough - do you find any of the painkillers work at all

Onlyaphase Thu 14-Jun-12 11:44:12

Sorry Pavlov it sounds like you've reached the end of your tether.

I can't figure out if you've had physio or not? DH and I have both had really painful episodes of back pain, spasms, immobility etc over the last 2 years, and physio sorts it out. One session improves mobility, four sessions puts you back to normal in our experience.

PavlovtheCat Thu 14-Jun-12 11:49:47

onlyaphase no physio offered. Osteo said he did not want to do this until pain was under control...then he would give me some exercises to do. I really don't know why I was referred to osteo rather than pain clinic as he does not really do much. apart from sympathise.

I think I should go back to gp.

PavlovtheCat Thu 14-Jun-12 11:51:27

and the problem is that by the time the gp or anyone refers me on to someone else it takes so bloody long the pain has subsided enough for me to manage without intervention other than some anti-inflammatories, by the time i got to a physio they would be like 'and we are doing this why?'

Iamseeingstars Thu 14-Jun-12 12:03:18

I chased physio and they have now said I must not do my exercises and have complete bed rest. But staying in bed makes it worse when I need to get to get up and walk around

Onlyaphase Thu 14-Jun-12 12:23:38

Can you not self refer to the physio? I did as I couldn't face going to the GP and having to wait.

It is £34 a session around here, and it does the trick in stopping spasms, releasing the tension in muscles that is causing the problem in the first place and increasing movement and flexibility to stop recurrence. I'd happily eat porridge all week if I had to as the difference it made to my quality of life is immense

PavlovtheCat Thu 14-Jun-12 12:27:59

only if I thought the physio can help I would go and happily pay the money, but the osteo does not think physio will help right now hmm and I am worried I would be wasting money I dont really have for them to tell me they can't help at this stage.

iamseeingstars is yours a lumbar disc that has prolapsed or bulging? more than one? is the bed rest for that reason or another?

I am going to go back to the gp, I am just not sure what to ask any more, what will help, what is next. It all seems to be pain management only. And I am not happy to accept that right now.

I have been through the system and remember how utterly frustrating it is to have to wait when you're in so much pain. I was told a few years ago that there is nothing they can do for me, but while my GP was referring me for anything and everything she could think of we tried:

Physiotherapy
Osteopathy
Acupuncture
Hydrotherapy
Painkillers
Bed rest
Craniosacral therapy
Massage

Just in case there's something on that list that you haven't tried! smile

Oh, and the pain management clinic too.

Pavlov keep pushing to be seen, keep pushing for referrals. If one doctor won't then make appointments with others. Maybe keep a diary of how your pain is? I found that being able to show GPs/consultants etc my diary was very helpful, as it illustrated my condition far better than me saying I was in constant pain.

PavlovtheCat Thu 14-Jun-12 13:36:38

joyful I have actually started that this week as there are now so many aches and pains I can't seem to recall them all when i try, or make sense when I try to explain. I wil take it when I go to my next appt.

PavlovtheCat Thu 14-Jun-12 13:36:47

great minds grin

grin

That's ok Iamseeingstars I am a bit over sensitive at the moment, this thread is really helpful, if only to know that other people are going through it too.
The painkillers do help but then I am a bit of a zombie on them, the relief after the operation was amazing but I have another herniated disc higher up . I think it's that and scar tissue which is causing the pain.

pavlov I was badly let down by my GP so I think that you must be assertive (which isn't easy when in pain and feeling down).

Did you say that the MRI is still to be reviewed? It does sound from the sciatica that there is nerve entrapment.

The only thing that really helped me long term was getting a tempur mattress, that did make a difference.

I have had physio, homeopathy, acupuncture. My mother has even offered to pay for a breast reduction which I am seriously considering now.

PavlovtheCat Thu 14-Jun-12 16:27:13

tough that really does sound tough. when did you have the op? The MRi is to be reviewed formally next week with me, however the osteo's boss has looked at it already and informed me no nerve entrapment, which clearly my body is telling differently. The reason he called me was actually because something else came up in the scan! (I have a horseshoe kidney, which might or might not be a problem, but currently appears not, and he is clear the back pain is not linked with the kidney).

When I was post-op, the hospital prescribed two paracetomol, two codeine and two valium as the optimum pain cocktail. You need the valium to get the muscles out of spasm as they get into a horrible cycle of pain causing spasm causing pain causing spasm.

Have you got a TENS machine too? I'm not sure if that would work. Maybe you also need another MRI of your higher back? I think they're a few hundred quid privately, though it's been a few years since I had one.

I had the ops last year. I do wonder whether you need a contrast dye MRI or another opinion?
My GP refused me an MRI and I paid privately , it was £500 last year. By then my leg had gone numb and I had cauda equina syndrome.

I possibly am being a bit alarmist due to my experience but sciatica is trapped nerve pain.
I also have had two Drs disagree about my last MRI results.

Do you have pins and needles anywhere pavlov or numbness?

PavlovtheCat Thu 14-Jun-12 16:44:29

tough I am going to go through with a fine tooth comb and may well ask for another one. I agree that sciatic pain is trapped nerve pain. I guess what they are looking for is permanent entrapment which is causing nerve damage. their (osteo) attitude seems to be, if no nerve damage, not much can be done surgically.

PavlovtheCat Thu 14-Jun-12 16:48:11

tough i get pins and needs in both my right and left foot, mostly my right, and in either only from time to time, and some in my right calf. Funnily enough I also get it in my right hand!

re numbness. none in my leg, but I have had altered sensation around my backside region. Not enough to not feel, but it is numb, just not completely numb. at christmas it felt quite numb indeed but because I had control of my bladder and bowels they did not seem concerned. I should, in hindsight, have gone to A&E at that time, but I did not realise I would probably have got an MRI right at the time the nerves were being trapped badly.

If that happens again, I have told DH, I am going straight there, end of story.

pavlov I really do think that you should get another opinion, especially if you are getting pins and needles and patches of numbness.

I know how draining it is and you feel as if you are being a nuisance/hypochondriac but the nerves are getting affected somewhere along the line.

PavlovtheCat Thu 14-Jun-12 16:55:24

tough you are right. I am off to gp tomorrow to have a chat about referral to pain clinic. i will go and talk with osteo and get their opinion fully on thursday while waiting for my gp to procrastinate a bit about referring me onwards again grin

PS I had control of my nerves and bladder when my leg went numb, it isn't always definitive.

I took myself to A&E, they got hold of my MRI from the private hospital and I was sent in an ambulance to the London Neuro in Queens Square within an hour.

I genuinely don't want to scaremonger or dramatise your situation but equally feel uncomfortable that you seem to have been left with clear symptoms of nerve irritation.

PavlovtheCat Thu 14-Jun-12 17:01:24

tough the osteo just sort of scratches his head. He is very sympathetic, but they are just perplexed that acupuncture and steroid injection does not cut it. I just have no faith that whenever I see my gp, or my osteo I am going to com out with any better idea there is something actually wrong/or that can be fixed.

Can you get a private one off consultation with a consultant? Or ask for quick NHS referral? Put it in writing stating clearly that you have pins and needles, intermittent numbness etc.

PavlovtheCat Thu 14-Jun-12 18:34:12

tough have not actually got a consultant for anything as yet. I have a mutant kidney, a screwed back and yet there is no rush for anyone to do anything at all.

I am realistically going to have to go to work on monday. As much as I can't really face the slog around the office in pain, having to see my clients and answer questions (which generally goes along the lines of 'i hurt my back, now butt out...!' being asked lots of questions, having to get up a million times, and attempting this without pain relief meds as I can't manage on even a low dose of co-codemol without totally spinning out when people try to ask me a serious question. I sort of look at them like 'uh?' for a moment or two or more. I sort of think maybe another week off to test the waters re no pain meds, but then as I am walking and can sit ok (getting up it the problem) I feel a bit of a fraud for not going in. Lots of people work when in pain so no reason why I should get out of it. I might try no pain meds tomorrow and see how that goes.

PavlovtheCat Thu 14-Jun-12 18:35:00

tough what consultant would I need to book with? there seems to be so many that deal with backs, would it be a neurosurgeon? or is there another type of back specialist?

PavlovtheCat Thu 14-Jun-12 18:37:20

oh and to add to my list of woes, I have throbbing in my calf now. I can't recall who told me, another mumsnetter on another one of my moaning threads, that this is a symptom, reminiscent of DVT symptoms and she had to have them checked out. I had this before a couple of months ago and it passed, it has returned. I know it's related to back, but, I should probably mention that to GP to <adds to symptom list>

VivaLeBeaver Thu 14-Jun-12 18:41:04

Pavlov, I have degenrative disc disease and bulging dics in lumbar region and cervical (neck) region. Pilates has halped a lot. Really can't emphasise how good it is. If you can go to a few classes to find out the basics and then get a pilates back dvd, there is a special back/pilates one. I went to classes run specifically for back pain rather than normal pilates as well.

Ask for a referral to a pain clinic. I'm a lot better since they put me on all sorts of weird and wonderful meds - gabypentin, amyltriptelene, etc.

PavlovtheCat Thu 14-Jun-12 18:49:01

viva I have been doing pilates actually, and body balance, both of which I enjoy, body balance in particular I love. I think it helps with the inner me as well as the physical me. I find it difficult to go due to DH working shifts that often coincide with the times of the classes. Over the last 5 weeks I have not been at all (went once I think) as we had chicken pox one after the other and that wiped me out sleep wise caring for the children, who were up in the night a lot, plus DHs work, then DD broke her arm and it has been chaos and now this week I can't go as I am in too much pain. Both instructors are aware of my back problems and give me warning of those which I should avoid, at the beginning of the class we have a discussion if the routine has changed about major parts that focus on the back and as the class goes on the instuctors give a reminder/prompt as we go into the exercise to either go to level 1 or avoid (usually go into dog or child pose in that instance).

I have found it helps lots. And I vaguely wonder if not being able to go has affected the strength of my back, even in those few weeks. Maybe I need to do those exercises every week/several times a week without fail.

Hi pavlov a neurosurgeon would be ideal, I hope you get somewhere with your GP with regards to this. If you get time, every local PCT should have a back pain 'pathway' that you should be able to find on the Internet ( or ask GP).

It is a clear protocol for what should happen eg my local one is MRI if not resolved in 8 weeks, referral to surgeon in 3 months etc.

My GP didn't follow it but I wish I had known about it as it can be useful in trying to get treatment.

PavlovtheCat Fri 15-Jun-12 07:12:32

oh that is really helpful to know about the pathway, i did not know there was one. i will absolutely find the time to go and read it! seeing gp today. will see what he says be prepared to bang my head against the wall again

PavlovtheCat Fri 15-Jun-12 07:52:44

tough i just read through the pathway for our pct. WTAF? I have no idea why I have been referred to a bloody osteopath. no wonder I am getting no treatment. I mean its excellent that I have had an MRI. But, i really need to be having a hospital consultant look through this with me, not an osteopath! From what I can see on the NHS direct info, osteopath treatment is classed as 'complimentary medicine'. 6 MONTHS of pain. and I am not even in the right place.

Let me know how you get on, I hope you printed, laminated it and stuck it on the GP wall grin

PavlovtheCat Fri 15-Jun-12 14:34:50

got the results of MRI from gp, he had them faxed across from osteo. it seems all the lumbar discs are protruding, and are dehydrated. L5/S1 has a tear and broad based central protrusion. the other discs have uneven endplates and schmorl nodes.

gp says it is not fixable, short term 'find a way to avoid the things that will risk causing a further protrusion (i said, like, my 2yo old DS?!) and maybe long term to remove the discs. He almost, but not quite apologised as he did not think this would be the outcome. I think he just thought I was being a drama queen, and shovelled me off to an osteo to get some woowaa done and now he feels a bit silly as there is clearly something wrong not just me having a 'back twinge'. He is also aware that the MRI states no nerve impingement but that currently, this is not true as there is. He thinks this will ease off as it is due to the disc agrevating it after being pushed out, and that it will go back in, just taking time as dehydrated.

I asked him if therefore I can expect this to repeat itself and he said he does not know, but when I pushed him conceded that it is likely. great.

I asked where now. He said 'good question' he asked what osteo has done so far, I said MRI referral, acupuncture, steroid injection, and so he said to go back to next appt and see if he can do some more physical manipulation or something to help ease the pain. No referral to anyone at the hospital or elsewhere.

I got some nerve pain medicine, not amytripiline, something else, cant recall as not in front of me, begins with G. He indicates this needs to be taken long term and has given me a bundle of repeat medicine so I don't run out of anything. Thats reassuring. Not. This med will take a few days to build up so wont help straight away.

And no more about moving on to look at why there is so much pain NOW as obviously things have upped a level since the scan.

And I now know why. I called him back as it bothered me. Since I spoke to him at 10am, he is on holiday for two weeks. Could not be bloody bothered with the referral.

PavlovtheCat Fri 15-Jun-12 14:37:37

I told him about pain in arms, and he did not really say much about this other than lots of discs are affected so likely displaced pain.

Does anyone know what areas are scanned in Lumbar MRI? I know not the Thoracic/cerival region, but is the Sacral region scanned? I worry now that if this is the problem with all the lumbar discs, then could it be affecting other areas. I am certain that some of the pain problem is much lower down in my sacral area.

mouldyironingboard Fri 15-Jun-12 14:57:54

Sorry to hear that your GP isn't being helpful. Sometimes you have to insist on being seen by the right person. If the osteopath doesn't know how to treat you, it's probably worth looking elsewhere for help.

Once your extreme pain has begun to ease it might be worth seeing a physiotherapist. Mine showed me how to get out of bed and climb in/out of a car, bending from the knees etc when my back hurts. If you feel able to do them, try doing some of the pilates exercises that help as you want to try to get your strength and movement back once the inflammation has died down a bit.

Do you have to sit for long periods at work? Try using a wedge cushion. It will help your posture and using a lumbar roll cushion (or rolled up towel) will also help support your spine. Also make sure that you have regular breaks (to get up and walk around) and that your chair is at the right height.

The throbbing calf and patches of numbness are caused by sciatica (which I've got). It will gradually ease off once your disc bulges improve slightly but it may take weeks or even months to improve.

mouldyironingboard Fri 15-Jun-12 15:00:20

just seen your last post. Yes, the sacral region would have been scanned in a lumbar MRI (as mine showed up problems).

Gabapentin pavlov ? Would that be it?

PavlovtheCat Fri 15-Jun-12 19:12:21

tough yes, that is the one. I now have a grand cocktail of drugs and will be getting a lockable box for it all so I can reach it (our normal drugs/first aid box is high up out the way of the children, can't reach it!).

mouldy ok so that is good, although I was sure that much of the pain was from that area, I guess it is the L5/S1 disc pain that is eminating. I have a proper lumbar support chair at work with a dip at the back, but could probably do with more support at the base. I will talk to OH again and get my chair reviewed. I do sit for long periods, and it is the type of job that sometimes I can sit for 2-3 hours getting carried away with a report before even remembering to move. My boss suggested getting a timer for my desk to remind me to move/get up every 20 mins. I would use my outlook but that pings and I automatically click it off blush so that won't work. The biggest problem is that I do a lot of 1:1 work with my clients which involves working with them for up to 1 hour, normally sitting down. I need to be thinking more diversely when working with their needs so I might do more flipchart work and get both me and them moving around more! my boss would be impressed I am sure grin

I have taken low level drugs today (15mg/1000 paracetamol plus diclofenac) as I have had to do school run, and visit a friend. It did me good but has knocked me out and I am in more pain, despite being able to stand upright. I seem to be hurting everywhere right this second. I had a bug last week (which seemed to trigger this episode of acute pain) and I guess I am still not over that, nerves seems to be hurting everywhere, facial neuralgia thing that I normally only get when I have migraine. Maybe I am getting one due to feeling a bit stressed. I don't know. I just don't feel right, or happy. I am in all honesty wallowing in a pit of self pity. What I know is, that should I feel this way on monday I cannot return to work. And that pisses me off as I have stuff to do. And I enjoy my job.

PavlovtheCat Fri 15-Jun-12 20:22:05

I called the head osteo guy this afternoon, the one who did the MRI referral as I am not happy with not much being done. I got a call this evening! 7:30pm so must be his tidying up the paperwork time before going to the pub home grin. This is the doctor who refered me for MRI and did the steroid injection. I think he is, in fact the Pain Clinic Consultant. I have never been told. He works as a GP at the surgery, and he is an osteo, but I am now thinking I see and have been seeing him in the capacity as 'consultant' that people say I should have but seems like I did not have. Normally I see his colleague and for MRI referral/results and injections he is the man. Sound like the consultant to you? nice I was told, but hey ho, got there in the end...

anyway, we had a good long chat. the crux of it is he considers the problem with my back as 'wear and tear' (like I am a car), and not too bad. He said it won't get better. But, it might not get worse. I tried to engage him in discussion about possible outcomes in the future and he said the problem with this and back problems generally is the psychological effect on people, especially around looking at what might be. He then talked about trying not to get down about it, keep positive. I tried to explain that the type of person I am, I will worry less if I know possible outcomes, even if they are potential worst case scenarios, as then I can plan around those as far as I am able. Some people might then become maudling, but I am less likely to. I am a risk assessor by profession and part of how I look at things is to look at what is the risk, when/how/to whom and what measures can be put in place to reduce or manage that risk? And, that is how I look at my back. It is the not knowing. I don't want to be told it might not get worse, if there is a good chance that is will. I need to know that. He just does not get that. He said try not to let it get me down. Well, it has. I said if I can know, I can spend a week down the dumps and wallowing, get it out of my system and crack on. Anyway. that was a ramble.

He talked like I am old woman. He said when older people's discs dry out, they suffer with less pain than younger people with disc problems as there is less disc to bulge out/trap nerves shock and that in time I may find this happens to me. I said that very statement made me feel old.

So. He said, I need to speak to the other Doctor (his osteo colleague) to discuss physio etc. I might talk to him about a long term course of acupuncture, only had 3 sessions last time, maybe I can have some more. won't hurt as he does it there and then and he can talk to me about other options while I lay there like a vodoo doll.

He talked about these acute episodes being a backwards step but to not let them dishearten me, as they can become fewer and far between with exercise.

Now, this is the worst bit. He said that there is no reason why I can't do most things I want to do, being sensible, within reason and not being daft about it, swimming, the gym, going to work, playing with the children. So I said 'well that is really positive, will I be able to kayak again? obviously not right now, but in time?' and he stuttered and carefully said 'nooooooo, not really, well, not at all' and went on to tell me why not, twisting/pushing/pulling etc was exceptionally hard on the back. He said if I did I could really do some damage or words to that effect. I asked if he meant for now, or ever and he stalled and said 'see how it goes in the future but not now or anytime soon'. And then he went onto the whole 'don't let this get you down' business again.

But I am allowed to be down aren't i? for a little while at least? honestly. Kayaking is what I love doing. I don't do it much these days with the kids, but this year, been waiting to get out there on the water. DH says that 'we can afford to be positive can't we?'

Wow that was long and I doubt anyone will read it. But if you do, well done grin. I am in pain right now so off to bed to take painkillers.

PavlovtheCat Fri 15-Jun-12 20:25:03

and he said something along the lines of 'lots of people do not understand back pain and it can be seen that wear and tear might not hurt that much, but in fact it can be very very painful'. sort of made me feel like my pain levels are not really understood or beleived. and that makes me feel very sad. I want some-one professional to bloody validate my pain, you know say 'no wonder your back is hurting, you have a prolapsed disc, that is going to hurt when its popping out'. I know I am, but no-one really seems to fully understand HOW MUCH pain this is, and how constant and neverending it is even when it is ok.

How can that just be 'wear and tear'? I am not 70. I am 35.

PavlovtheCat Fri 15-Jun-12 20:40:08

ok, so 'wear and tear' is degenerative disc disease, but its ok, as 'even those with 'flare-ups of acute pain in their 40's will eventually find themselves pain free by their 60s as the discs degenerate completely'.

well thats ok then. Only another 25 years of pain to go.

PavlovtheCat Sun 17-Jun-12 21:23:11

fuck.

another lapse. unfortunately, my DS was running around when we were out for father's day, father was busy socialising with other fathers! DS refused to come with me as it was raining, so I had to pick him up and he kicked and fussed and wiggled his legs. Could not put him down as he fussed while we on some concrete steps.

i am not sure if it has gone again like last weekend but i suspect so. last weekend it went on saturday, I could move a little on saturday, sunday, unable to move. Today, the pain is the same as saturday, but I can move a little. Waiting for the seizing up of the back sad.

And, cant take heavy duty painkillers, as DH is comatose having drunk too much whisky with his male friends and has passed out! (an entirely different thread). But in the morning will take them again.

Back to square one. I really did not realise I actually have to stop most things for a week including caring for the children sad

mouldyironingboard Sun 17-Jun-12 23:20:42

Pavlov, it sounds like you haven't given your back a chance to heal rather than a new injury causing your pain.

Your DH (or other friends/family) need to help you out with DS during the next few days, otherwise the prolapse will take much longer to recover.

PavlovtheCat Sun 17-Jun-12 23:43:47

mouldy, yes I agree. Don't think its 'new', just gone back a few days in recovery and feels like it did when this 'lapse' happened.

Mostly DH has helped, but I have to remind him constantly and I feeling like such a nag. And out for a meal today, like a drama queen.

I am quite pissed off with DH though, because it was ok when at our lunch gathering to celebrate fathers' day with some of our other friends with very young children, so the men could pat each other on the backs on how well they have done as parents, and the kids could all play (and they did beautifully, aged between 5 and 1).

What the problem was, the men wanted to go back to one of their houses to have a 'whisky coffee' and watch some footy. They have a good sized garden, weather was nice, kids stuff mostly done for school, they offered to feed kids, great idea. Lets do it.

On route to their house, I told DH that my back was starting to hurt a bit more, and I had not taken high dose of medicine as driving so DH could have a couple of beers, so, although Father's day, could he please help with DS, picking him up etc. He was like course darling, its about us being together as a family, not me being centre of attention blah blah.

Cue, the men getting absolutely hammered drinking whisky, me then having to look after DH/DD/DS, get them into the car, get them home, into bed.

My friends helped, and more so after I cried in pain and their slow realisation that my back is not just a little sore. But, they have their own children to take care of too.

I just can't see how I am going to be able to give this back enough time. Life continues. I can't make it stop. And DH works a lot of evenings so I do the whole bedtime/tired cranky kids period. And I do the early morning excited period. both of those times involve children who like to hang on my neck and lift their feet off the ground!

Sorry. that was a right ol proper moan.

PavlovtheCat Mon 18-Jun-12 13:15:24

Can I ask another question, specifically for those of you taking medication for nerve pain such as gabapentin etc. How would you know, if this is working well and there is no sciatic pain, if the nerve becomes trapped? Would you still have pins and needles, and numb patches? what should i look out for in time as the sciatic pain eases with this medication I am on?

The reason I am concerned is because I obviously have a trapped/irritated nerve right now, so although the MRI showed no nerve entrapment, that was several weeks ago and this 'flare up' is doing something. GP and osteo consultant guy seems to think that is due to the 'episode' I am having. But, if this happens again, or continues to cause severe sciatic pain, how would I know if this is not nerve entrapment now, or, in the future. what do I look out for?

The disc that is herniated could herniate further in the future couldn't it? (or could have already), and the other bulges could herniate in the future, so does this medication mask those things happening as I won't have pain in my sciatic nerve?

not sure if I made sense, I know i waffled. sorry. I shall blame the drugs wink

lookbutdonttouch Mon 18-Jun-12 13:56:48

Hi, I have followed your story (so to speak). I am 35, used to be able to be able to do all sorts, dance as a hobby etc. Now I cant. My back has always been a bit iffy. It went before I had kids, then went as in hospitalisation about 8 years ago.

Since then I have episodes like yours every so often. I have prolapses at S1/L5 and L4/L5. I have permanent nerve damage in the sciatic nerve now. So they could operate but its probably not going to be that successful, they left it too late to do anything - kepts saying I was too young.

I am on diclofenac, co-dydramol and gabapentin (dont like amitryptilene (sp??)). I have had two injections so far and lots of MRI scans.

The point of my potted history is to say, I do understand, giving up a loved hobby is shit, really shit. I would say, give it up mentally for now and have a real downer about it. Then if things pick up a couple of years down the line - great! I sobbed like a baby when I had to stop my hobby, now I can do bits but not much.

I know you were doing core work stuff too?? When this all calms down, go back to that and dont stop. The instant you stop, things go floppy and you are at risk. I know if I exercise and I am at risk if I stop (so I dont....).

Your DH - needs a real kick up the arse. Go to bed, stay there if you can and force him into action. Your DH will need to help you with the kids and work later, re-jiggle things about for a while to get you over this.

Gabapentin - take it at night, not in the day if you can. I started straight onto 300mg at night. I am trying to increase by another 100mg, tried it in the mornings and I was awful so I am adding it to the night dose. Helps with sleep. I dont think that the gabapentin would mask anything major going on. If something slipped further or trapped anything seriously you would know. The pain meds / gabapentin only does so much.

Hang in there and get your DH to help... Or lose is 'D'.

Oh and it does get better. 35 isnt old even if you feel it right now. I creak like a battleship at 35 but its ok....!

HTH

PavlovtheCat Mon 18-Jun-12 14:22:09

lookbutdonttouch thank you for posting. how sad that they did not move quick enough to stop nerve damage. I am worried about that. But, I have full movement in my legs right now, other than they are not working well as I limp/hobble when i walk right now!

thanks for the re-assurance about the gabapentin not masking real problems that might go on, i can take it better now. I did not take one last night due to the reason posted before. I took one this morning, and will take the second one due today this evening. I don't want to delay it any more, as I am hoping the side effects will have reduced enough that I might be able to go into work on friday for 2-3 hours. Is that being unrealistic, to think returning to work is possible on friday?

right now I am back in bed (well on the sofa) moving every hour, standing and walking, but it is very painful. It is not as bad as sunday/monday, but probably same as tuesday, as in mobile but not good. I am not able to stand straight without shooting pains down my leg and my back hurting, i am hobbling, it is taking a long long time to move anywhere.

I am glad you have been able to move forward but sad for you that you have had to mostly stop your hobby.

lookbutdonttouch Mon 18-Jun-12 14:41:02

I didnt want to scare you! I work full time and go out and still have a full life, have fun with DD etc. It just means I plan more. Dont do the ironing all at once. Dont clean the kitchen floor ever . Hoover floors rather than the house all at once. Things like that.

Oh and I wear heels. Not every day, but if I am going out or something, I wear flats all week so I know I can get away with it (and take diclofenac with me).

If the gabapentin makes you feel funny in the day, seriously think about taking a large bit at night and then the other bit in the afternoon. The side effects do wear off.

Mine went through a phase of popping out every so often without warning so I have crutches at home and a set in the car. Depending where you live you can the spare pair??

Right work, do not over do it or go back too soon. I would say dont go in on Friday, wait til next week. I dont know what you do though. However if you have to do the kids that night then dont risk it!!

There is life after a prolapse - promise.

PavlovtheCat Mon 18-Jun-12 14:48:43

oh no you didn't scare me! i have always been concerned as I have heard lots of people who have not really been taken too seriously and it has left permanent damage.

And, fabulous news about high heels! obviously not this weekend though wink and I dont wear them a lot anyway, just nice to from time to time. I think the crutches idea is good and is something I have been thinking about already. It just helps me move, and it will help me get back to work more quickly when the disc plays up. Did you get yours on the NHS or did you buy them? they are really not very expensive from what I can tell but DH is very 'no way are we buying them if you can get them on the NHS, don't be daft'. but, at the end of the day, this is my back, and I will use my money to buy it if I have to.

PavlovtheCat Tue 19-Jun-12 10:44:02

You know I asked about neck pain and arm pain, and possibility of it beng a disc further up? I think it is. Main neck pain had gone but...

The day before my lumber back 'went' again, I developed stinking headache and pain the neck, and threw up. From then on I had sore muscles and nerves, in particular in right arm and leg. Anyway, it probably was still a bug. But. When my back went I also had neck/head/arm pain. And I had tingling pins and needles sensation my my face. I thought that was the bug. I had it when I threw up and thought it was a migraine or something at first as I sometimes get that type of face tingling with migraine, but it was not.

So, since the bug has gone, the face pain in re-occurring, I jus thought I was run down and stressed, and arm pain was transferred as suggested here, made sense. Still have some but not bad finger pain.

I just read about cervical disc rupture or bulge, not deliberately, it was in the same article I was reading about lumbar disc stuff, and the symptoms of cervical disc problem include pins and needles in face and neck, as well as nerve pain in arm.

I am now worried that the disc degeneration I have it further spread than just my lumbar area. Spoke to osteo as in a lot of pain today with lumbar pain, and can't get thurs a lot moved forward. He said very little point as I need to rest up today and getting to his clinic would aggravate it. Need to stay at home. Yeah right, I have two children and my Dh is at work...

I will talk to him about if this is possibly higher up too.

And I think a nerve is trapped right now as pain is severe, can't stand straight have pins and needles in foot, intermittently but often now, and in calf. I feel like a mess.

VivaLeBeaver Tue 19-Jun-12 11:11:56

Can you get another MRI SCAN DONE? I know the waiting times are often long though. sad

Last time I had a bad relapse and couldn't walk or wee I was admitted to hospital so I could have an inpatient MRI done and it was done within 4 days. But as an outpatient it can be weeks/months.

PavlovtheCat Tue 19-Jun-12 11:18:30

viva I am going to ask on thurs. the actual wait from referral is about 2-4 weeks, it's the admin that takes the time as there is a mobile scanner locally so is very quick, but my osteo has to refer me to his boss, a weeks wait, then he completes referral, then the company he refers to calls me, another week, sends the referral to people who book it, another couple days before they call me then bout a week, maybe more for the date. If I could bypass the joke of a referral system it would be two weeks tops.

PavlovtheCat Tue 19-Jun-12 11:20:27

I do wonder whether I should go to hosp when it is acute, as walking is impossible for several days, but weeing is only a problem insofar that I can't walk to th loo easily! What happened when you were in hospital? What did the MRI show?

pavlov I really think that you should present at A&E with a list of those symptoms. Seriously.

PavlovtheCat Tue 19-Jun-12 11:31:21

tough I can't. I got parents evening, I got to get both kids from school and Dh from work. I am sure it can wait til thurs, I don't have drooping foot or bowel/wee problems. I have just taken some diazepam and strongest dose of painkillers, should sort it out to get me through today. I did not do strongest this morning as had to do school run. Well Dh took them in but I needed to drive car home after dropping him at work after, he called his boss to say he would be lat so he could do it. I should not have driven really as it hurts, but no choice.

I asked osteo about crutches, he said not to use them, as if in that much pain my walking is difficult, I should not be walking. He said do ice packs, which is great, but That is easier said than done!

VivaLeBeaver Tue 19-Jun-12 11:35:16

I was admitted onto an orthopedic ward where they didn't much apart from give me morphine hourly. They also ended up cathertising me as I couldn't wee.

The MRI showed I have degnerative disc disease, 2 slipped discs - one lumbar and one cervical. The discs are bulging but not pressing on a nerve so they won't operate.

I also have a friend who was admitted with the same problem as me - her disc was touching hte nerve. She was unable to walk and after a few days it was no better so they operated.

PavlovtheCat Tue 19-Jun-12 11:49:24

viva sorry to hear it is degenerative. I have been digesting the report from the MRI and it is ddd too, they just have not given it that name - uneven end plates, reduced height prolapsed disc and the other lumbar discs are all protruding and dehydrated.

How do you cope? What strategies do you have to cope with it, both acute and chronic phases? You might have told me already...

VivaLeBeaver Tue 19-Jun-12 11:56:20

Pilates, but I think you said on another thread that you already do pilates.

Amyltriptelene is good, only take it at night.

Trying to keep as active as I can. Have spent £1k on a memory foam mattress. It is bliss. Best money DH I ever spent.

I was scared when I was first told it was degenerative, it gives imagies of it progressively getting worse. My consultant says thats not the case and people in their 30s are normally at the worst stage and then the discs dry as you get older and shrivel up and don't protude as much. Not sure how true that is.

I work as a midwife and am scared I won't be able to as I get older.

PavlovtheCat Tue 19-Jun-12 11:59:09

viva my osteo said the same thing, it will get easier as I get older as the discs are too dry to protrude when older. That makes some sort of sense.

Does it badly affect your work now? Are they supportive?

VivaLeBeaver Tue 19-Jun-12 12:01:43

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.

FoofFighter Tue 19-Jun-12 12:04:14

Hi Pavlov smile

Sorry to hear you aren't faring much better sad

I've forgotten what I was going to say now, hang on need to re-read hmm <stupid med head>

FoofFighter Tue 19-Jun-12 12:15:54

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.

PavlovtheCat Tue 19-Jun-12 18:00:57

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 blush.

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. shock

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.

VivaLeBeaver Tue 19-Jun-12 18:03:19

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.

How are you Pavlov ? Someone posted about memory foam mattress, I second that as the best thing I have ever spent money on.

PavlovtheCat Tue 19-Jun-12 19:28:32

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.

VivaLeBeaver Tue 19-Jun-12 19:33:00

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.

VivaLeBeaver Tue 19-Jun-12 19:35:12

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

PavlovtheCat Tue 19-Jun-12 20:22:31

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.

PavlovtheCat Tue 19-Jun-12 20:25:52

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

PavlovtheCat Tue 19-Jun-12 20:34:10

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 wink

VivaLeBeaver Tue 19-Jun-12 20:34:14

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). grin

FiftyShadesofViper Tue 19-Jun-12 20:51:57

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.

PavlovtheCat Tue 19-Jun-12 20:57:51

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.

FoofFighter Wed 20-Jun-12 12:55:48

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 sad 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.

PavlovtheCat Wed 20-Jun-12 13:44:14

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.

FoofFighter Wed 20-Jun-12 14:39:55

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 sad ) 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 sad 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 blush 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.

PavlovtheCat Wed 20-Jun-12 18:45:43

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..

VivaLeBeaver Wed 20-Jun-12 22:28:43

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.

FoofFighter Thu 21-Jun-12 02:26:40

You'd be protected by the DDA though Viva?

PavlovtheCat Thu 21-Jun-12 10:20:37

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?

PavlovtheCat Thu 21-Jun-12 14:55:13

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.

PavlovtheCat Thu 21-Jun-12 15:28:24

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?

VivaLeBeaver Thu 21-Jun-12 17:49:13

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. sad

PavlovtheCat Fri 22-Jun-12 13:33:34

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!).

PavlovtheCat Fri 22-Jun-12 13:37:12

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 grin. 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.

FoofFighter Fri 22-Jun-12 17:26:01

Hurrah for plans and hemp soap grin 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 wink

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

PavlovtheCat Fri 22-Jun-12 18:32:14

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.

VivaLeBeaver Fri 22-Jun-12 22:53:43

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. hmm. 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.

PavlovtheCat Sat 23-Jun-12 09:46:51

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.

mouldyironingboard Sat 23-Jun-12 14:17:38

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.

PavlovtheCat Sat 23-Jun-12 16:42:18

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.

FoofFighter Sun 24-Jun-12 10:20:45

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.

PavlovtheCat Sun 24-Jun-12 12:03:33

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 sad

mouldyironingboard Sun 24-Jun-12 16:00:24

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.
.

PavlovtheCat Sun 24-Jun-12 17:19:50

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.

PavlovtheCat Sun 24-Jun-12 20:57:49

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.

Badvoc Sun 24-Jun-12 21:12:23

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 sad
What else can I do?
Can an osteopath help me?
I am pretty desperate now.
Thanks

mouldyironingboard Mon 25-Jun-12 00:08:35

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).

FiftyShadesofViper Mon 25-Jun-12 00:18:22

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.

Badvoc Mon 25-Jun-12 16:26:51

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 sad

FoofFighter Mon 25-Jun-12 17:18:17

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.

PavlovtheCat Tue 26-Jun-12 09:15:50

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 shock 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 shock. 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!).

Badvoc Tue 26-Jun-12 09:23:38

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 smile

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

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

PavlovtheCat Tue 26-Jun-12 10:20:48

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.

ThoughtBen10WasBadPokemonOMG Tue 26-Jun-12 21:52:14

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.

PavlovtheCat Tue 26-Jun-12 22:19:08

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.

ThoughtBen10WasBadPokemonOMG Wed 27-Jun-12 09:50:30

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

FoofFighter Wed 27-Jun-12 17:09:06

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?

shushpenfold Wed 27-Jun-12 17:16:49

Pilates - I'm sure you may have tried this but I had terrible, terrible pain for 6 months with my herniated disc...I too had v young child (ds was 6 months when it 'went') and after constant pain popping I was advised to try pilates OR surgery....which was a very interesting option at the time. For the first 2 months of it I could do hardly anything for constant muscle spasms and a complete lack of awareness of my muscles, but after 10 years and 2 more children later (which finally sorted out the muscle spasms) I am a new woman. Pilates can give you your life back, but you do need to stick at it and make sure you go to a good practitioner (look on posture perfect pilates as opposed to classical - not good for dodgy backs) Good luck xx

rookery Wed 27-Jun-12 17:20:20

Sorry not to read whole thread and apols if someone else has already said this but ex dh has nerve pain related to back issues (prolapsed disc, ruptured disc, then spinal fusion and underlying issues relating to a disability) and has been on pregabalin to help with the nerve pain.

The thing that doesn't take away the pain but helps him to cope (especially when the pain is horrific) is mindfulness meditation. He uses the Jon Kabat Zinn CDs on mindfulness for pain relief and it has helped him to come to terms with how things are with his body. (It helped him survive a night in hospital when morphine wasn't touching the pain). I'd definitely recommend them for anybody but JLZ designed a whole programme (described in a brilliant book called Full Catastrophe Living) for people living with chronic pain. It's been tried and tested but you don't have to do the whole programme to benefit.

Good luck. This must be so draining. I hope you can find some relief soon. And again, apologies if someone else has already mentioned this but I didn't want to read and run.

PavlovtheCat Wed 27-Jun-12 18:19:02

rookery is a prolapsed disc not a ruptured disc? I get so confused with the terminology. Mine has torn at l5/s1 and the other lumbar discs protrude. I have considered mindful meditation previously actually, not for back pain, but just for living! I would be interested in trying it, along with other things such as pilates.

I also realise I am not completely averse to CBT. My bother with it all is that the medical route has given me this as the sole outcome from my diagnosis without trying other things. I want complimentary, I want to help my own mindset, but I want to explore real physical options to support my recovery (if that is, in fact a word).

Sorry to hear your DH has so much pain with it sad

FoofFighter Wed 27-Jun-12 19:05:52

AFAIK, slipped and prolapsed are the same thing, and herniated and ruptured mean there's been leakage?

Could be probably wrong though

PavlovtheCat Wed 27-Jun-12 19:23:06

ok so a bulge is a prolapse? (this was referred to as a protrusion on the MRI report) and a tear is a herniation or a rupture? so many words for it!

FoofFighter Wed 27-Jun-12 19:33:44

Yep I think so? too damn right it's confusing!

rookery Wed 27-Jun-12 20:22:36

Pavlov I think a prolapsed disc is when it's bulging out but exh was told that ruptured disc is when the whole thing explodes and you're left with basically no disc and all the toxic innards of the disc swimming about.

Good luck with trying to find a way through this...

PavlovtheCat Wed 27-Jun-12 21:20:46

rookery oh shock how absolutely horrendous for your XH! mine has not done that! It is torn with a bit of the innards sticking out. I guess, some of the toxin will leak out more from time to time? would that explain what causes a 'relapse' as I don't really know what is causing this to 'keep relapsing' and having me unable to move for up to weeks at a time. I know that up to xmas, it may be that the disc was not torn, but was bulging, and caught on a nerve, snagged it, I had pain, it stopped snagging, but certainly by xmas the tear occured as this shows on the MRI that was done before this last episode. So once, torn, why does it then flare up? what caused this last episode as the tear is already there? Or is it that as I move about, it can snag then unsnag a nerve? or is more 'toxin' released? I have so many of these type of questions and my osteo, well I can't imagine he would let me get so far as to ask the questions, so I want someone to fire these at who will know what I am asking. How can I manage these episodes properly if I don't know what causes them. I know its a disc problem, but what, if the damage is already done?

<sigh> I am just going to go around in circles.

ThatsNotAKnifeThatsASpoon Wed 27-Jun-12 23:57:14

Pavlov I had a herniated disc at L4/L5 after having my dd and overdoing it lifting her in her car seat up 4 flights of stairs regularly. I couldn't do physio because of pain. Got a private referral to a back surgeon, he initially tried a steroid injection but like you, the relief was temporary.

I don't really understand the reluctance to try surgery, most of my pain was in my back but he suggested surgery was the best opinion given drugs/steroid injections just didn't cut it. I was in agony & could barely walk, it was awful not being able to enjoy my maternityleave with dd.

Anyway had a microdiscectomy about 3 months after first diagnosis & the relief was instant & so far, 18 months on at least, permanent. No faffing about with osteos, pilates, drugs etc. When you're in that much pain at such a young age I think you've got to get them to seriously consider surgery, you don't want to be cursed with this the rest of your life.

I get the odd twinge these days, when I do I just dial it back & take it easy. No drugs of any kind needed. My back surgeon was my saviour - please, demand a referral to a consultant.

PavlovtheCat Thu 28-Jun-12 07:43:06

thatsnotaknife that is a really positive story thank you for sharing it, its not that I want surgery, absolutely not, but I cannot, simply cannot sit here and accept that long term back pain is my future. I am so very active, not just the things I like to do, but my general state is running around at a million miles an hour. I am quite skinny despite eating lots of junk because I have high levels of adrenaline and always move fast. I am sooooooo frustrated at the slowness right now, even though I am moving almost back to normal, if someone was to see me, it is still much slower than normal, and I can't just do the whole multi tasking thing any more. DH has noticed I am hardly eating, but I am also not losing weight (i dont think) and I have said this is probably because I am not actually doing much, and not fast. I don't want this to be me forever. And I won't accept that. So, it might not be surgery, but I certainly want to explore all the options fully and not just be told flippantly that 'you are not a surgical candidate'. And maybe it will be the case that I will be suitable in the future if this gets worse.

Oh and your suggestion that I am young? Apparantly, according to the osteo's boss and the osteo, this is normal for a 34 year old! grin Yeah, because I can see lots of women my age like this hmm

ThatsNotAKnifeThatsASpoon Thu 28-Jun-12 11:43:10

Sorry Pavlov, didn't mean to suggest you were anti surgery, I just don't understand why you've been told you're not a suitable candidate. I don't think you should accept the opinion of a GP or osteo on this, you need to get an orthopaedic surgeon to review a recent MRI.

I'm sorry you're feeling so down, I know how you feel. After the surgery it did take a few weeks for the nerve to settle down & initially I was quite fearful that I would relapse and never be free of this. At age 29 I was contemplating never being able to work again, it is scary stuff I know.

Regarding your activities I know it's hard but you must listen to your body, if you feel pain STOP. I ignored back pain for too long too. This might not be forever for you, please push for a referral or change GP & get surgery properly explored. Go private if you have to and have the means to do that.

It doesn't have to be this way - best of luck.

PavlovtheCat Thu 28-Jun-12 12:11:09

oh no i did not take it your suggesting I am anti surgery! I was just clarifying that I would like to explore all options, including surgery and why this is not the best option for me. the only answer I was given re not being a candidate, is that no nerve is being trapped permanently, at the time of MRI scan, and this is the only circs they would consider surgery. I agree I need to have it fully investigated by neurosurgeon or other specialist and explained/full alternative plan of action put in place, with me involved.

PavlovtheCat Fri 29-Jun-12 17:17:58

I have had a hell of an evening shock i did summer fair. It was mostly indoors on account of the weather. DS insisted on being carried, I can't take the pushchair out of the boot as it is a big brick of a pushchair, not a stroller (he does not go in it often so we never upgraded to stroller!). Not that a stroller would have been any good, would not be able to get it around/up and down steps. It was chaos, then on the way back to the car, while my sciatic pain was agony, DD ran back to me in tears as she had dropped her and DSs cake. CUe mucho tears by the two of them. So, i sent DD back in to buy two more, DS kicked off as he wanted to go into the scrum too, and I could not pick him up easily as I had bags/cardigans. By the time we walked back to the car for the final time I was almost in tears due to pain. DD said to me 'what is up mummy?! shock as I tried not to cry and I said 'its ok sweety my back is just a little sore' and she said 'oh mummy it looks like you are going to cry!' I was feeling v tearful 1) because it hurt 2) because I was aware that every step/wiggle by DS meant I was closer to my back screwing up majorly again and 3) i could not do a thing about it 4) I was not going to be able to this kind of thing on my own again and I was so upset.

And to top it off I missed my dose of gabapentin last night. Not able to take it this morning as it meant I would not function all day and I have to prepare for DDs birthday/DH had to go to work/school fair etc. I don't know if this why sciatic pain is worse today. It was flaring up a bit yesterday, but today I have had sporadic periods of numbness/pins and needles up both legs, all the way up. Hard to explain but maybe you know what I mean - small patches that shift quickly, like it is following the direction of pain.

However, a good thing happened. I spoke to a mum who I know vaguely at DDs school but really like. Her DD is in my DDs class and they get on well, her DD is absolutely lovely and she is coming to play with DD on her birthday with some other friends. Anyway, we caught properly for the first time to chat. She walks with crutches and has a clear disability - she has almost the exact same condition as I do, one tear, all the other lumbar discs bulging/dehydrating, and has the same osteo as me, struggled with the same barriers as me, been referred to the same CBT course (told me not to bother, they blamed her condition and the levels of pain on past negative experiences). Anyway, firstly it was really good to talk to someone else who understands, secondly, it was good to know that I am not the only one who has had it indicated it was my inability to cope that causes the pain, clearly not true as we have both had different experiences in life yet they are saying the same things to both of us, thirdly she recommended a private chiropractor who she said is amazing and fourthly she is a really really lovely woman, who manages her life fabulously despite this condition from which clearly she suffers significantly. Although I also feel down that she has not found that magic cure I am looking for grin

lookbutdonttouch Fri 29-Jun-12 17:20:05

Hi sorry not been about much.

Firstly do not let them spin you the crap about 'not being a surgical candidate'. Please (metaphorically) hop up and down and get a second opinion. Or by the sounds of it first for you. You need to see a neurologist. The neurologist needs to see your MRI results. Not the GP or the osteo. The osteo is nice for the inbetween times while you wait for the consultant appointments. The neurologist can decide whether they should be going down injection and pilates route or surgery route.

Waiting too long and you will have permanent nerve damage and they say 'oops sorry, too late for surgery now, we will refer you to pain management'. You are 35 ffs, too young for this.

Please become a pain in your GP's side or change GP.

And re the crutches, I got one set from the hospital after an acute moment when I was admitted for a few days when my legs didnt work (no surgery, not a good candidate, too young), and the other I cant remember!

VivaleBeaver - you have my sympathies too. I have weird gynea / urology issues and have now been written off as a possible hysterical female. Its not nice, especially when the pain is still there and they look at you like you are complaining about a splinter.

PavlovtheCat Fri 29-Jun-12 17:46:58

look that is what I have said to the mum I was talking to about it. I am not prepared to give in as nothing needs doing other than tramadol yet. I am not going to do it. I just am not. DH keeps saying 'but what is it you want? they cant do anything, what do you want them to do?' He does not get it either. that I am not ready to see this as my lot now. that even if things move onwards and I feel better physically than I do now, I cannot beleive that it is ok for me to feel in constant pain, low level or acute without exploring as fully as possible all possible options. It may be that surgery is not the right option. It may be that I choose not to have surgery even if it were an option. But, to just say, this is it, have some drugs that are not compatible with your lifestyle or your job and have some CBT to get your head around it all, I am not ready.

So I will be metaphorically hopping up and down. Thank you, and everyone, for helping to validate my desire to not lay down and accept my fate just yet.

I am just not sure how on earth I am going to manage my job and this medication. I might have to stop the gabapentin as it is not good for functioning beyond the necessary. I need to stay focussed at work, and get there on time!

rookery Fri 29-Jun-12 20:39:36

Oh, I really feel for you! This is so tough... Don't rule out the mindfulness for pain relief stuff though - it isn't anything like CBT (which I think is of incredibly limited value, having been 'prescribed' it for depression. Pththth) and although the mindfulness practice won't take away the pain xh says it offers a very physical way of living with the pain while you figure out what comes next...
How do you find the tramadol? That really messed with my xh's head and he just couldn't function. He ended up taking anything BUT tramadol... I really hope you can find a way forward. I can't begin to imagine how it is for you - only that I've watched xh (I still share a house with him) endure this and it's just horrible.

PavlovtheCat Fri 29-Jun-12 20:54:38

rookery I have not taken tramadol yet. But that is because I have said no, rather than because it has not been offered. I am taking codiene/paracetamol, diclofenac and gabapentin. I think I have built a tolerance for the cocodemol, but the gabapentin, not currently for sure. It just seems that the only direction I have left is tramadol. It seems to be given out like sweets, despite it being highly addictive, as the cure all for most physical chronic pain. If, if I go down the tramadol route, it will be when nothing else is working, as most people I know find it floors them completely. There is no way I will be able to work on tramadol, although GP was very 'lots of people are absolutely fine with it' yeah, most are not!

I have reduced my painkillers, apart from the gabapentin, as I need to get myself in a suitable state to get into work on monday. And pain free but high as a kite is not ideal grin It is ok, but as I said, tolerance to painkillers is higher than nerve blocker. I am just not sure I will be ok on it.

I will definitely try the mindfulness. I really do want to be in a better place, and definitely agree it is good to help find ways to cope with now, while waiting to make decisions for the next step (or waiting for other to make that decision!) and I am into meditation as a way to keep peace with myself, I just don't want to be thrusted into CBT as a cure all. It needs to be used alongside, not instead of that is my issue with it.

I am feeling better. I have chosen to substitute codiene with wine. It is not a good idea as I have lots to do to prepare for DDs birthday on sunday. But, I am next to useless this evening, as I am very aware that I have pushed myself a bit too far today, I am ok, but if I don't stop now I might not be.

rookery Fri 29-Jun-12 21:02:07

I hope tonight is restorative and that the wine helps smile

PavlovtheCat Fri 29-Jun-12 21:07:54

I am sure it will be grin I am only having one large glass of red, as tomorrow late morning I am taking DD to a birthday party that happens to be right by my gym. So I am dropping her off and going to use the jacuzzi. I will do one length of the pool first, jacuzzi then to have a coffee with the adults at the party.

Then it is Armed Forces Day so I think there will be a parade or something going on so we will go and take a look at that and I will get the last bits for DDs birthday on sunday, so I can't be hungover grin

Tramadol is the work of the devil - it made me projectile vomit and turned me into a zombie. But at least if you don't like it you can flog it the nearest junkie.

Have you tried a TENS machine? I used one for a couple of months and it helped. It didnt' get rid of the pain, but the irritation of the constant buzzing took my mind off it.

ThoughtBen10WasBadPokemonOMG Sun 01-Jul-12 07:55:42

Hope you're feeling a little better.

I went to the pain clinic a couple of weeks ago and casually asked for some tramadol for breakthrough pain. The pain doc was most definitely not going to give it to me. He is on a crusade to get it banned due to the addictiveness of it.

I would suggest asking the GP for some amytriptiline or nortriptilyne on a pain dose. That helps me so much esp to make sure that I get a good night's sleep which is so important.

You could also ask your GP for pregabalin instead of the gabapentin as the side effects from it are slightly different although works the same way. Some people who find that they can't function on gabapentin are fine on pregabalin.

<tries to focus brain through 2700mg of gabapentin> grin

ThoughtBen10WasBadPokemonOMG Sun 01-Jul-12 07:56:56

btw there are loads of other options for pain than tramadol. There are things like lidocaine patches that are very expensive for the NHS but you put them directly on the painful area. I don't know whether your GP can prescribe these or whether you have to go to the pain clinic.

Iamseeingstars Sun 01-Jul-12 13:05:17

I've got morphine, tramadol fentanyl, And a couple of others, bit I don't find them effective.

The best one I use is Oxycodone, but again, reading info online it can become very addictive so I am worried about taking too much. Took it regularly today and by tonight was able to walk without my crutches. Sadly tomorrow will be back to walking frame/crutches

ThoughtBen10WasBadPokemonOMG Sun 01-Jul-12 17:49:36

Oxycodone is fantastic. I had that after my haemothorax. I was in a bit of a different world to everyone else though!

It can be addictive but I know that in America people are prescribed it for the reason that it works. It had far fewer side effects than morphine for me.

PavlovtheCat Mon 02-Jul-12 07:36:57

Hey everyone.

I am going to see the gp tomorrow or wednesday. I should go today, but it is my first day back to work and I would prefer not to call up and say I will be sometime between 9:30am and 11am while I wait to be seen grin I will talk to the gp about different meds, as I have stopped the gabapentin completely, I just cannot function on it other than basics. It would probably be ok if I was not at work, but even then, it changes me to Not Me, if that makes sense. DH is having to look after me as I cant remember things, find things, cant always finish my sentences. I have been told by lots it takes a while to settle but I don't have 6 weeks to get it sorted.

I was a little blase as the sciatic pain was easing, still there, getting worse through the day or if I lift things but mostly managing until the afternoon. I realise now that a) it increases in the afternoons as I was taking my meds at night and it was wearing off b) the medsst were doing a lot! I stopped it on friday, and it has gradually creeped back and this morning I have a reasonable amount of pain in my right leg particularly.

I also am very very stiff in the morning when I get up, it takes a good hour before I can get straight, and whenever I sit down, or crouch down I am hunched for a while afterwards. I have a particular isolated pain in my back now too, like the pain has decided where it is, and as the day wheres on it is really painful to walk.

It has been over 3 weeks now. I hoped to be moving much more free of pain and without hunching. although I am further on that I was 3 weeks ago. At least I can stand straight if I try, it just hurts, where 2-3 weeks ago it was not actually possible!

I am nervous about work mainly due to worrying about the state of my caseload, rather than my back, I think I should be able to manage that ok as I am risk assessed at work, not at home! I think home would fail wink

I will definitely make sure I speak to the gp about referring me to the main pain clinic now, at the very least, so that I can talk properly about long term medication to suit how I live and I will talk about some of things you have mentioned. I think I am going to have to find a way to not take meds in the day time, only evenings, not sure how likely as I am going to have to take something this morning.

Thanks, as always for being here to support me everyone. It is good to know there are people who understand to talk to.

How did work go pavlov?

PavlovtheCat Tue 03-Jul-12 20:26:26

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 grin. 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? <sigh>

PavlovtheCat Tue 03-Jul-12 20:30:19

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' blush.

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 sad

PavlovtheCat Tue 03-Jul-12 22:16:14

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.

PavlovtheCat Tue 03-Jul-12 22:18:22

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

PavlovtheCat Fri 06-Jul-12 21:26:35

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 shock 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 grin 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

Iamseeingstars Sat 07-Jul-12 02:15:30

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

Iamseeingstars Sat 07-Jul-12 02:16:40

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

PavlovtheCat Sat 07-Jul-12 09:30:27

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.

PavlovtheCat Sat 07-Jul-12 09:32:45

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.

PavlovtheCat Tue 10-Jul-12 16:06:28

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.

PavlovtheCat Thu 12-Jul-12 16:13:26

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?

ThatsNotAKnifeThatsASpoon Fri 13-Jul-12 13:45:24

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 sad

ThatsNotAKnifeThatsASpoon Fri 13-Jul-12 13:47:45

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

PavlovtheCat Fri 13-Jul-12 21:11:40

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 grin.

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.

ThatsNotAKnifeThatsASpoon Sat 14-Jul-12 08:13:07

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.

PavlovtheCat Sat 14-Jul-12 11:03:18

ok so not the guardian it was in fact <whispers> 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.

PavlovtheCat Sat 14-Jul-12 11:03:51

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

ThatsNotAKnifeThatsASpoon Sat 14-Jul-12 13:51:42

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.

PavlovtheCat Sat 14-Jul-12 20:31:35

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 grin. they will learn.

Reenypip Sat 14-Jul-12 23:53:32

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?

PavlovtheCat Sun 15-Jul-12 19:07:31

Hey reenie, yes I know what is wrong now, well according to my last scan, but not convinced about it being accurate now. it is more than there appears to be nothing that can/will be done apart from some cbt and it is frustrating. I just don't want to be in pain, albeit low level for the rest of my life, just because that is what I am told. I want to fight it a little first. but, it seems many people think I am simply over reacting to it all and have to just accept that a) its not really that bad and b) this is just how it is going to be <sigh> its like going around in circles. I know where i want to be going (neurology/neurosurgeon) to discuss my future plans, but there are barriers and I can't get past them.

I am just so sick of having been so active to being able to do so little before I have to stop. I try to remember that I am so much better than I was, mostly walking straight, and from an outside perspective it would appear I am ok now. But, for example, I carried a bag with some birthday presents in (bottle of wine, some nice dinner goodies) and I could not do it from the beer garden to the car (hardly any distance). This evening I have potted some (3) small plants, one into a slightly bigger pot, not huge at all, and i picked it up and it impacted on my back and leg, and although my back has not 'gone' i am now in so much pain I have had to sit down with legs up and going to have to take high level of cocodemol to sort the pain sad. Went to the beach on my birthday and just watched the kayakers and surfers in the pouring rain and fab surf. two years ago i was in there with them on my birthday.

I am so sorry to hear you are suffering so much sad, and have had infections, that just sucks. what are you having done this time on your back that means they go through your abdomen? i think you have said before, sorry if you have! you are having such a tough time of it. when is the op planned for?

smilesandsun Sun 15-Jul-12 20:13:43

Hi Pavlovthecat, Sorry to hear that you are going through this. I can't add much other than that having gone through a similar situation myself I think you are certainly on the right tack to try and see a neurologist so you can hopefully avoid or at least limit long term nerve damage. I hope you get through whatever barriers that you are facing in this regard.

Reenypip Sun 15-Jul-12 22:21:01

Hi Pavlov,
I understand what it's like going from being so active, able to walk as far as I want, able to do all sorts of things that I didn't have to think about it.
Now, I can't walk, I can use crutches to transfer (I'm thankful some feeling has come back below my waist) and use a wheelchair. There are lots of things I can't do what I use to do. But I have to try not to dwell on it and concentrate on what I can do.
My pain is really really bad too. A lot of timed it confines me to bed. I could easily stay in bed all the time but I have to really fight it and change my mindset. I think of the times I've nearly died, and how precious life is, and what things I'd like to do, and how I want to be happy. So for example, even if pain really bad, I dose up on morphine and fentanyl, and i go out to do what I wanna do. In march, I wanted to go to the zoo with my baby boy. So even though that day I can't predict if the pain will flare, the days before I must prepare and rest as much as I can, I must also plan to keep the days, the week after the trip free to recover. I might also ask my mum to keep part of the day after free so she can look after Cody while I'm in bed in absolute agony, crying and screaming.
Going out doing what I wanted to do, made me happy, but then I know I will suffer afterwards. Sometimes I question was it really worth this extra excruciating pain. But if I didn't do this, I'd never be able to do anything I would enjoy.

In a way, it's like grieving for the life you believed you would have, the hopes, dreams, ideas, are no longer what you thought.
My life completely changed 6 years ago at age 20.
I had good gcses and a levels, and wanted to be a dentist. I missed out on my grades I needed (AAB but got ABB). So I went to uni to do another degree and planned on doing dentistry afterwards. I also had 2 part time jobs too.
Then this all changed. I had to leave my jobs and uni. I had to face never walking again and a life of debilitating pain, and becoming dependant on everyone around me, I was like a baby again. Having to have nurses, and my mum wipe my own bottom, and do all sorts of very intimate personal things, I really hated.
I've progressed slightly, that I'm becoming and still learning to be more independent.
It was hard and still is watching other healthy people my age and older doing things I couldn't do.

Reenypip Sun 15-Jul-12 22:25:23

Since this, I've become even more aware of life and death, and the smallest things most people take for granted.
I do my best to stay positive and I try to concentrate on the good things and the things I can do.
I struggle all the time with this, trying to be positive, and accepting this is for the rest of my life. At times it really gets to me, but somehow I find another positive, and it keeps me going.

Reenypip Sun 15-Jul-12 22:32:10

I'm grateful that despite the excruciating pain and other horrible debilitating symptoms, I can find some beauty, love and compassion in life. And this can be, being able to listen to the birds tweeting outside, feeling the wind upon my face and hair, a warm embraced hug from a friend or loved one, the stunning sight beauty of nature, and so on. I'm so grateful that my illnesses and conditions have made me appreciate the most basic and most important of things.

Can you tell I'm trying to in a positive mood at the moment?!

Reenypip Sun 15-Jul-12 22:34:32

What did they find your problem to be? And what barriers are stopping you seeking orthopaedic/neurology consultant?

The op is going to be a anterior and posterior fusion.

Pavlov I'm on my phone but I've recovered from a nasty L5/S1 injury. As soon as I am near my home computer will write you a longer post. I have some thoughts. Hope you're doing ok.

PavlovtheCat Mon 16-Jul-12 22:03:50

Had a small relapse from yesterdays exertions [ha]. went to work, did ok, but not able to straighten, ended up in tears at the end of the day due to continued obviousness of my pain and too much sympathy/being like a goldfish bowl being stared at, questions asked, and being in too much pain and not able to take my full dose of painkillers.

So, several colleagues told me to go home and not come back to work til i am actually ready. But I have my stage 1 disciplinary for meeting the trigger number of absences. So I am going to dose myself up and go in.

reeny i feel pretty crap about moaning about it all when you are struggling so much with your stuff which is so much worse. I should count my lucky stars. My 'summary' is 'discopathy of all lumbar discs in particular l5/s1 with an annular tear not impingeing on a nerve' - l5/s1 is reduced in height due to dehydration, the tear is broadbased central tear and is indenting the dural sac. the other discs are protruding/dehydrated. Uneven endplates whatever that means. It is not that bad I guess. Even though it feels like it is. I am sorry I have not been on the other thread, just finding it difficult to focus on posting in too many places. Not very supportive of me sad

And I disagree about the nerve impingement, certainly now. since that MRI at the beginning of May I have had a huge relapse of now 5 weeks which I am just simply not recovering from quickly, there might not have been according to the MRI but there is now.

And now. I have just had enough. I just want to go to bed and stay there.

I cant see how exercise and carrying on helps. it is making it worse.

OK, here I am.

Having read the whole thread, I understand what a lot of the medical professions are telling you. I also understand why it appears to be conflicting. But in fact the only point at which I think you've had poor guidance has been the bedrest advice. Ten years ago that was the consensus but now it's thought it makes the problem worse.

I also think you'd be much better off with a physiotherapist than an osteopath. Not just because your osteo appears to be rubbish - but because in fact a slipped / herniated disc can't do much more than recover slowly, and you need work on the muscles to support it as it does. Not including cortisone injections or surgery of course - of which more later...

The best thing you can do to aid recovery is to build up the muscles in your back which are holding your back up. Bed rest will make those muscles atrophy - and faster than you think. Your pain relief schedule is aimed not only to reduce inflammation, but also to encourage you to use those muscles and hold them in a normal way. Physio will give you exercises which will work on those muscles without causing harm.

Not holding your muscles / frame in a normal way can cause further problems and I do wonder if this explains the other pain you have been having. In my own case, I had disc pain for a year and then unbeknownst to me the disc did improve, but the pain was replaced by (identical) muscular sciatic pain. I might have continued with this indefinitely had I not talked to a colleague who convinced me the pain in my upper buttock especially indicated a muscular issue. Back at the physio it turned out I had been standing on one leg - I swore I wasn't but looking at myself in the mirror it was clear that I was. Three sessions of deep tissue massage later and I was an awful lot better. I still have some pain if I lift heavy things but I can go about my life again. The fact cortisone injections have been less than successful leads me to wonder about a muscular issue as well. If it is - it's very good news as it can be treated quickly.

As far as surgery goes - only a spinal surgeon can tell you if surgery is a good idea, certainly not an osteopath. In fact, my surgeon told me the extent of the herniation is not always an indicator of whether a microdiscectomy is required - often larger herniations break off as they calcify (and so problem solved) whereas smaller ones do not.

I think you do need to take your painkillers - not doing so will create a vicious cycle where the pain becomes worse. Also - how's your mattress? If you have an old one I'd consider getting the best one you can afford. And if you're under 16 stone, make it a medium rather than a firm so your hips sink into the mattress when you're on your side rather than staying on the level, which leads to a bend in your spine just where you don't need it.

Oh - and drink lots of water.

PavlovtheCat Tue 17-Jul-12 13:32:07

josie thank you so much for your post. I completely agree about not standing correctly making things worse and I am trying to get myself back into a normal standing position. I am very aware that I am standing more on on leg than the other, and try to force myself back into walking normally but the pain is immense. I have finally got a physio appt, for 2 weeks time. I am hoping that this will give me some more definite guidance for exercise and i really could do with some actual hands on stuff, so positive to hear that this route my help me get back to a good posture. I have almost completely stopped exercise due to the pain, and I can see that it is as you say a vicious circle, and I need to get on top of that again. What about swimming while I wait for the physio which is not for 2 weeks? i want to do something but afraid I will do more damage if I don't wait, but also know i should not wait.

How long did it take your disc to repair?

GP has given me tramadol, not taken it before now, but he thinks it will help more than the codiene. He wants me to take them for 2 weeks at least, after I said I would them a try for a couple of days! spoke to him about the gabapentin and said that it did help a little but not as much as I had hoped and the side effects were that it wiped me out. He said that the starting 300mg is the bare minimum and he would anticipate this going to 900mg before i would see real improvement and agrees that if 300mg floors me 900mg would make me unable to function. I do know I need to take the meds, and realised that at work properly yesterday. But, there is a pay off isn't there? If I take the meds, esp gabapentin (unsure about tramadol yet) i can't work. I don't want to lose my job.

GP is going to review my casenotes and make an assessment about next steps as he finally agrees this is going on too long now and I am not recovering as quickly as I should. I told him how I feel like it seems that this is it now and I have to find a way to accept this, which upsets me, and for a change he was quite determined in his manner. he told me not to accept this, I do not have to, and that he needs to have a think. I really suspect he knows what avenues he wants to go down but wont tell me for some reason. He seems to have his hands tied as he appeared unwilling to send me packing again but unclear about what to tell me. Some concerns expressed that the tear might have got worse/another disc has ruptured, but he was reluctant to give a real view on it right now.

Another week off work. He said there is no way i should be at work if I can barely walk into the surgery, and was quite cross about it! He also thinks I went back to full hours too soon, and will be recommending a phased return when I do go back.

OK. I do think he needs to refer you to a consultant, I'm not sure why he's holding on to this himself.

I was in pain for almost exactly a year. The pain was childbirth-like at first. Truly awful. And then I couldn't really walk, or put my own socks on. And then I sort of could, and lived for my next dose of painkiller. And I stayed like that for a long while.

I utterly empathise with the feeling that your best years are behind you. I felt completely like that. But you have to believe that they're not. Because the disc has such a very small blood supply it heals verryyyy slooooowwwly and there's not much anyone can do about that.

Comments that it's possible to have a herniated disc without pain aren't really helpful. It all depends on which way the disc squidges, for a start. If it squidges outwards, or sideways, it won't be irritating your spinal cord.

But it is the case that your mind has more control over pain than you'd think. Fear exacerbates pain, as does stress. Childbirth is a case in point. In fact, I think I understand more about what people tell you about childbirth now - as the stuff you get told about managing the pain in childbirth was quite similar to what you get told about managing chronic pain. Think about how you feel about - say - a painful spot. Once you've seen it you're much more aware of the pain than you were before. So when people say there's a psychological element to pain they're not belittling what you're going through, it's just the way pain is.

I had dicoflenac, codydramol and diazepam. I avoided the diazepam at work for the same reasons as you but always made sure I took some when I got home.

PavlovtheCat Tue 17-Jul-12 13:58:54

josie that is exactly how my pain has been! at christmas, the pain was just like childbirth! i remember my MIL driving me to the pharmacy to get my prescription (long story why she did not go herself!) and every movement in the car triggered what felt like a contraction, and every movement i made was the same and i could hardly move, and eventually, that intense pain subsided and I was left with the longer term pain that i managed with meds. Then in the last 5 weeks, i was backwards, unable to move, although the pain was not as childbirth like as at christmas, it has not gone back to manageable, well it did but only for a few days to be honest.

How long did you take diazepam for? i am very reluctant to ask for it, for fear of looking like i am an addict! I also am taking diclofenac x 3 daily, have been for a while now.

I am not sure why he is holding back. I asked him what else can be done if I am not to accept this as my lot, and he said 'i need to think about this' and that he would review my case this week when he case time to look at my notes. It is not that he has no clue about back problems, as he clearly understands the MRI results as he went through them again with me, and has explained them to me in more detail than the osteo who referred me, so it is not that he does not know what to do i am sure of it. He said there are more options now, but wont tell me what they are, will go through it all on monday.

Ok. Well, push hard for Physio at the very least. And stay in touch x

Oh - I had the diazepam on prescription for the whole year, but as I mentioned above I only took it in the evenings.

And - no more lifting of DC. Hugely tough - but they need a healthy mummy. You can do it in the pool though! I had to stop carrying DD at 18 months. It was very tough. But we worked around it - she was in a cotbed early and had a bathroom step in the kitchen so she could climb into a booster chair (rather than a high chair) herself. She soon adapted.

PavlovtheCat Tue 17-Jul-12 14:39:58

you are also right about the childbirth and positivity. I had very little bother in terms of pain and managed it pretty well. In particular I remember talking to DD when I gave birth to her, telling her how well she was doing, walking up steps through contractions and back down the other side. I remember telling myself that this pain was good pain and it would not last, and feeling remarkably positive and in control. DSs birth was more painful and quicker and even then I felt positive about it despite asking for pain relief a million times Not saying it did not absolutely hurt, either time, as it really did, but i never felt scared at the impending pain, more excited, and focussed on the purpose of it when it did hurt.

I think with this pain, there is no good at the end of it, and I can't see that finish line. And I do fear, you are very right. I lay in bed for another 15 mins this morning as I knew it was going to hurt to get up so i put it off.

PavlovtheCat Tue 17-Jul-12 14:43:33

I am finding the not lifting DS very difficult. DD is getting it, she has been so lovely. She 'helped' me out of the car yesterday and has been massaging my feet, and she no longer asks to be carried, I will hug her and she will say 'don't pick me up remember!' she climbs onto a chair now and I give her big squeezes that way instead.

But DS is only 2. He is starting to learn, he will hold my hand more now when he wants me to carry him and I ask him to hold my hand instead but sometimes he refuses to accept that.

smilesandsun Tue 17-Jul-12 15:46:49

Hi Pavlovthecat, I'm glad to hear that you have a review again with the GP. I wouldn't be leaving the surgery without a referral to a specialist if I was you (as I didn't in my own case thankfully). It is difficult not being able to lift the little ones, but they do get used to it very quickly and your friends will help out when they are about too I'm sure.
I'm not sure on the rest thing mentioned by someone above as not being good. it was recommended (in the last 5 years) to me and it works for me though I am sure every case is completely different so I would say go with what you have been told.

Goodluck with your review.

You need to persevere. The disc heals so slowly - you need to give yourself every possible chance. DD knows that Mummy has a poorly back and that's why she can't have a carry. I kneel down when she wants a cuddle and she stands on my legs. You may find you have to carry on taking the pushchair out for longer than you did with DD.

PavlovtheCat Tue 17-Jul-12 17:50:38

josie we ditched the pushchair months and months ago! as it was big and heavy and DS walks everywhere we just stopped using it, and it has been too big for me to get out of the boot. However, I realised I needed to use it again so we have in fact bought a cheap light stroller about 3 weeks ago, and DS is quite enjoying the novelty grin. I used to carry him in a macpac, if he needed to be carried, but that way of him being transported is long gone sad

Chin up - we are where we are. It's much more important to your DS that you're able to run around the garden playing football with him this time next year. I know how down you're feeling at the moment, how frustrated, how you feel that other people despite being sympathetic don't really understand how stressful and misery-making it is to be in pain 100% of the time. But you will improve, you have to trust that you will.

PavlovtheCat Tue 17-Jul-12 18:29:21

I feel more positive after taking some tramadol today grin well that is quite a nice drug isn't it wink grin certainly helped me feel less horridly groggy and yuck like I did with codeine. It is lighter and fluffier and while I am more woozy on it than on codeine, i feel like it looks less obvious! but I might be wrong grin. luckily both children were already in after school club as DH is working this evening and I was due at work, so i left them in it to see how this new med affected me. Luckily i did as at 3pm when I would have got them if not in ASC I would most certainly not have been able to drive. I just lay here goofing looking at the sun coming through the window.

And, not sure if it is psychosematic (sp) but the pain feels a little easier to bear. Sort of like, I can feel it but it does not hurt as much, like it should hurt but doesn't. Not sure if that makes sense.

But anyway. I feel perkier.
Thanks for coaxing me a bit today. I was wallowing this morning.

Any time. PM me if you need to rant about how bloody unfair it is talk

Reenypip Tue 17-Jul-12 22:26:29

Hi Pavlov, moan away, I don't mind :-) we all need to time to time so no need to apologise.
I think you should definately push to be referred to a spinal consultant just so they can review you. If your current GP won't, can you see another?
How old is your daughter? She sounds so sweet and understanding.
I'm glad the tramadol is helping you.

I find it hard knowing I won't be able to walk and hold my boy's hand, or run around playing with him.
Alternatives though I can 'roll' around after him (when I'm well enough). Although I can't do certain things, I try and make it up in other ways.

Reenypip Tue 17-Jul-12 22:29:53

I want to get myself a hand cycle (so expensive though) for my own benefit and independence and enjoyment, but also when my boy is a little older, I can go over the park with him both on bikes (again this is all dependant on how well I am and the pain). But I'm determined of there is something I really really want to do in life, I won't let it stop me!

PavlovtheCat Tue 17-Jul-12 22:43:24

Tramadol not working as well as I hoped it would. Taken 3 today, and where I thought I would be all fluffy and pain free judging by this evening I was premature with my prediction. I am actually still in a lot of pain, even lying in bed as I am now. But. One good thing is I am less irritable! Normally on codeine and still in pain I am a bit snappy and impatient with he kids and can feel myself being that way, but this evening, I was much more mellow and I noticed it! Can't seem to sleep though, thought tramadol knocked you out?!

reeny dd is just 6 and is the most amazing girl ever. Her levels of empathy have always impressed me and continue to do so. I have to remind myself of what I have when I get low. Whatever happens, I still have my children.

PavlovtheCat Tue 17-Jul-12 22:44:53

I just googled the hand cycles, they look fantastic! Your ds is going to want one of his own though wink

PavlovtheCat Tue 17-Jul-12 22:45:43

How are you feeling at the moment with your pain? Are you recovering from the infections now?

PavlovtheCat Thu 26-Jul-12 21:50:38

an update if anyone is around.
Finally been referred to Pain Clinic at hospital and GP has written in his referral letter for them to consider a further MRI. He now thinks it is very possible that something further has happened (tear has got bigger or another disc has ruptured, or a bulge is further bulging than before) and he says the pain clinic can investigate further as well as helping me sort out long term pain management. Which I really do need now. But is at least 2 months wait. GP said 'light at the end of the tunnel' but agreed he had hoped this would be a 'just in case' scenario but seems more likely that it is going to be a long term need now. He gave me another week off work and a phased return next week, then off for two weeks on annual leave! Although I am not entirely sure I am going to be ready to go back, as pain by monday was ok ish, but just as I improve, it sets back again. Actually really worried about work as I have been off 3 weeks, back for two, but useless for half of that, then off for a further two weeks, then back as phased return so not full speed. I clearly cannot do my job right now.

I am taking 50mg tramadol/1000mg paracetamol x 4 daily and 50mg diclofenac x 3 daily. Stopped the gabapentin as it sent me to another planet and not even on a decent dose of that! It is just stopping the pain enough for me to function, but, on a scale of 0-10 pain, I am at around 6 most of the time, on those meds although I can mostly stand straight. I wonder what an earth it would be like without anything now. I missed one day of diclofenac as I ran out and DH had forgot to get the prescription and by the time I went to get it the next day I was almost bent over again, hobbling. I have a now permanent swelling in the middle/base of my back where I presume the muscles are constantly swollen/spasming. And my sciatic pain is constant, but the severity comes and goes. In both legs now sad

PavlovtheCat Sun 29-Jul-12 10:34:55

I am going to use this as a diary! good for me to see how it is all panning out and if any more advice and more sympathy grin

I have a permanent swelling at the hollow of my back now presuming where the muscles are constantly swollen/spasming. I also have sharp pain just a little higher up and a little concerned that is another lumbar disc causing that pain. Pain is constant now, varying between 4-6/10, occassionally higher, rarely lower. started taking paracetamol with the tramadol which GP did not suggest and that has helped a lot. If I stop the diclofenac I am screwed. Cannot miss even one or else I am back several steps. Cannot do anything that exerts myself or pain in back/sciatic nerve increases. Cannot find any position where there is no pain although flat gives me the most pain free position.

sad it is just not going away. I dont think it will now. I know lots of people are telling me to remind myself that this will heal I just cannot see it now.

PavlovtheCat Sun 29-Jul-12 10:36:09

lol just realised I repeated myself in the last post. guess nothing much has changed since my last post blush

FushiaFernica Sun 29-Jul-12 13:03:34

pavlov can you get physiotherapy nowadays on NHS for back pain?

FushiaFernica Sun 29-Jul-12 13:11:27

My grandad was a physiotherapist, we are talking old school here! Anyway he used to treat his patients at home, so my mother used to see his patients come in when she was growing up. She said that the patients used to look extremely unwell when they arrived to be treated for back pain, but he did seem to be able to help them. I don't know whether treatments have changed much since then though.

PavlovtheCat Sun 29-Jul-12 16:07:43

Hey fuschia I have (finally) got a PT referral and first appt is on wed this week. I can't wait but have lost any optimism that they will do anything hands on but rather send me packing with some basic exercises I cold rip off the Internet and some Get A Grip advice. No one medical has actually looked at my back let alone touch it in any way for months and months.

PavlovtheCat Sun 29-Jul-12 16:08:17

Meant to add that this is on NHS.

Viperidae Sun 29-Jul-12 16:13:19

Sorry this so shit for you Pavlov. No wonderful solutions, I wish I had, but hope you get something moving soon.

marriedinwhite Sun 29-Jul-12 16:27:22

Hey Pavlov, I haven't read all of this but I have two bulging disks low down and two in my neck. I have a fabulous physio and it makes a huge difference. She will do acupuncture in an acute phase, and generally massage, manipulate to release the spasms around the discs which is what, for me, causes the pain. She will sometimes also give me some ultrasound (might be wrong name which I think they say now is ineffective but I don't agree). The exercise do help a bit but I think it's more to keep you aware of posture, daily movement.

I find the heat pads you can buy helpful and have volterol for bad times which I'm told you must start immediately because it's cumulative so I might not be as bad as you are because it does help.

I get an acute episode two or three times a year and what I have in place helps me. My GP said that when it, if it, gets to the point where there are more days with pain than without, that is the point when surgery should be donsidered.

I have a good orthopaedic chair at work - it really does make a difference and have always been able to manage it so absences are minimised.

If you need help with the disciplinary stuff pm me and I will run you through the procedure and what they are statutorily obliged to put in place to support you before they should even think about taking any formal action against you.

PavlovtheCat Sun 29-Jul-12 16:29:13

Thank you, I am feeling extraordinarily sorry for myself, I know that!

marriedinwhite Sun 29-Jul-12 16:29:44

Meant to say - for your neck - make sure you have feather pillows, they are much better for making sure your neck is supported whilst not holding your head in an unnatural angle. If I ever sleep on a foam pillow I alwasy suffer terribly within a few days.

PavlovtheCat Sun 29-Jul-12 16:40:01

marriedinwhite thank you too! I might email you about the disciplinary. My understanding this is a formality to a) address those people actually taking the piss and b) to look at what needs to be done from work point of view to reduce the sick. But, it is the theory of it. The reality is, it is going to be on my record nd they are looking at cost saving exercises, would not be surprised if this now horrendous sick record will be used somehow to identify me for redundancy in the future.

Re pain, most certainly more days with pain than without pain. But how long do they observe that for? Weeks! Months? Years? If I had the cash I would go private at least for the initial conversations re surgery just to speed up the process of having a conversation about it.

PavlovtheCat Sun 29-Jul-12 16:41:42

Oh I am soo glad you recommend feather pillows! DH is quite anti them but I have always loved them and need new ones. I shall tell Dh it is for medical reasons!

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