back has gone again, not holding down meds. Hospital?

[Pavlovthecat]

hello. Despite the wonderful post that has led to lots of thread and posts and visits to my blog abou dillytantes amazing memory helping my back issue, I am sad to say that it has 'gone' again.

I need some advice. I am in a lot of pain. It has been threatening to go badly since the weekend, sort of did on sunday then was ok, but at the same time on sunday I started to throw up and have hardly stopped since.

I have not taken my tramadol since tuesday (so add a bit of withdrawal into the mix). I managed to hold down some water last night, so tried some rice cracker this morning, followed by a slow release tramadol and two paracetamol. They came straight back up.

Now, I always said that when it goes again like this I would be up at A&E not the docs as they just send me away again. But, now it has come to it, I am not sure. Added to the fact I am not able to take any pain relief has me thinking I should go. I have a GP appt at 10:40am but can't see what they will do. I am not sure I can even make it as I can't walk. I can have telephone appt but that is 11:30am onwards, could be as late as 2pm. That means if I am not happy, or if they suggest hospital, it coincides with DH getting the children. GP is unlikely to do anything I am sure.

I am ok if I am still. (But, clucking means I am fidgeting ). I am holding down a little water now.

WWYD? I am thinking if I get into hospital the very least they will do is get some fluid and some medicine in me before kicking me out? But, I have been here before and did not go to hospital, I feel a bit like a fraud.

[PavlovtheCat]

I am so glad you are getting some releif. Makes such a difference to have some respite, glad you can do some of those things that get missed too!

[LostInWales]

It's working really well, thank you Pavlov! My friends are both farm girls and commented today that I was looking much looser with a better stride, I think that would be a good thing if I was a horse anyway! I'm getting loads done as well a combination of low pain (woo hoo) and I think they do make me a bit 'wired' as I have been doing lots of bits and bobs that I would normally just ignore. House is actually starting to get organised.

[PavlovtheCat]

That is, a couple of glasses or wine, OR couple of bets, not followed by! And I only do it rarely, which is a shame. For some reason it have messed up my taste buds and I no longer fancy alcohol. Not impressed as loved to have a glass of three of wine to unwind when kids where in bed sometimes, just can't get past the first couple of sips too often without tasti the alcohol rather than the flavour.

[PavlovtheCat]

No not silly I completely get what you mean, that is exactly how tramadol effects my pain, I know it is there, it just does not hurt any more, especially so for the first few weeks of taking it. I he you stay clear headed and go girl with the singing!

And. Not suggesting you go and get hammered, but if you do like a glass of wine or a beer from time to time, I have been ok with two glasses of nice and slowly drunk wine and a couple of beers, not drunk, or out of it, or sick either then or the next day. Everyone's tolerance is different though Ian's I am sure a bottle of wine might have a totally different effect!

[LostInWales]

Actually having given in and taken it I'm feeling really clear. I think last time I was expecting myself to be sleepy so I just sat on my bum. I did catch myself singing whilst emptying the dishwasher though . I do feel a difference pain wise, seems an odd way to put it but I can almost feel where it isn't. That possibly makes no sense! Codeine just makes me so wooly,even my tongue feels swollen when I take a high dose. Tramadol as a study aid, that's a new one.

I love the internet too!

[PavlovtheCat]

I actually find now, rather than making me swimmy it is more likely to make me 'wired'. You may find the same after a couple of days, so if you get time to take it and not work, chill out at home with not a huge amount of responsibility like school runs etc, you may find after those first couple of days you can study well on it. I found with codiene for example that I could not work on it, I felt too drugged up and felt that it was quite noticeable, I sort of peered a lot and did a it of burning of the jaw, struggled to fully focus on conversations, but with tramadol I can work fine, as long as I have not had to take more than 200mg (occasionally I have topped up with normal release which gp has said ok, when paid increases, to a max of 400mg in one day). And I often find myself awake longer in the evening typing away on my blog etc (not this last week). I hope you find it works and gives you a bit of breather pain wise.

Funnily, now ds is watching Thomas and eating his lunch in bed, he seems fine! Well still has a fever, but not particularly unwell with it. So I have cleaned the kitchen and now doing a much needed Internet shop, plus birthday shop online too. I love the Internet!

Apologies for appalling writing in my posts, iPad corrects to easily and often incorrectly!

[LostInWales]

Thank you for that brilliant reply, I am going to give it a go today. I don't need to do any driving which was worrying me so I will take one now and then see if I can do my homework (I am doing an IT/maths degree part time so fuzzy head isn't really an option ). I've got my heat bags squished up my spine at the moment which is making me very popular with my whippet as he loves anything warm .

What a sod that your toddler had to be poorly today, typical, work sound brilliant though. I was fretting this morning about the weather as if it snows we are expected to walk in if we are under 3 miles away, which I have done happily in the past but this year would just be impossible. Fingers crossed I don't end up on the rota on a snow day! I hope your toddler feels better soon poor thing such a bad time of year for all the bugs going round. Hard to tell when you are poorly or not with all the medicines, I was taking one last year that you had to be careful with as it would mask the signs of serious fever. I wish I was a scientist that could make a specific drug to treat pain and not wander off around the body affecting lots of different systems too.

Oh dear, my friends say I talk too much already, this could be disastrous!

[PavlovtheCat]

lostinwales sorry you are in pain today i sometimes use diazepam to contol spasms, but go is ever keen to gove it. i also use ice/heat packs alternately 20 mins each every 2 hours to help reduce spams and on the days the spams are bad I lie flat and still for a good few hours. (Ignoring the whole, don't keep still theory).

Tram afoul is pretty fantastic as a chronic pain releif. I forget that when I stop it, and am bombarded with pain again, but just worry how much is real and how much is withdrawal, I suspect it is helping pain significantly more than I like to admit! It works by converting its opiate into morphine in the body, I think something like 5mg morphine for 50mg tramadol, compared to around 1mg for similar dose of codeine. I would suggest asking for modified slow release tramadol. I take 100mg morning and night (have reduced to just 100mg a day now though) and the side effects are significantly less than 50mg x 4 daily. I found I would get much more seasawing of pain as it wears off, as well as having to remember to take, and it stopped me sleeping at night as the dose was so concentrated and wore off in the night time. I now hardly get any side effects at all -the biggest one I have is constipation, so make sure you up fruit, veg, water (prune juice is great is you can bear it, i love it myself!) and if you are slowing down take movicol. Oh and i talk much more than i did before I had tired sleepy side effects for no more than 3 days to be honest, then it all reduced ands I only remember I am on it when I forget to take it for more than a day . Think about whether you might need to take any nerve lockers in the future with it, as it increases serotonin, as do some nerve blockers, so you may be a bit 'overloaded' with serotonin which make make you feel a bit unwell. But, if you have tried other pain meds and have thought about the withdrawal (takes about 2-3 weeks) then it does work well as a pain releif if you can get over the side effects.

My work is office based, they are really supportive, I have a new expensive specialist chair, can get up and move around whenever I like, have been given an interview room close to the reception for seeing clients, manage my own workload etc so can go in later/work later if I need to. Gp has also given fit note with phased return on reduced hours for one month,gradually increasing.

But, not in today as toddler is unwell! Dh gets paid hourly and already taken time off to look after me and the children so my boss has agreed for me to go in tomorrow instead, which is my normal day off. First day back yesterday felt so good to be at work! Although colleagues said they would ask me again in two weeks!

In terms of my back, I am soooo much better. Can't shake feeling of unwell ness but, with ds sick, maybe I am just unwell with his bug! All the meds I have been on over the last few months have seemed to result in no colds, or I don't really notice, so maybe it's just a bug that is a bit hidden. I mostly now have slight twinges in my back and leg/nerve pain and pins and needles.

Really hope everyone else who has been suffering recently is not struggling too badly today.

[LostInWales]

Hope work is going ok Pavlov. Is it a physical job or can you keep yourself ok by sitting/standing when you need to?

Can I ask a quick question about tramadol, apart from the awkward addictive bit when you stop taking it being a bit of a pain, do you find it helps with the pain much? I am having a shit day and contemplating taking them regularly to see if I can get past the euphoria and function better with a bit of pain relief. Also do any of you lot take muscle relaxant type drugs, I couldn't decide if the spasm of muscle pain in my upper left back was worse this morning or if it was the shooting pains in my right thigh. Happy days

[PavlovtheCat]

Oh so glad you were able to get down on the floor with your dd, how are you today for it? Hope you are not struggling to badly for it today. She must have been so pleased.

I am feeling better back wise, some mild occasional spasms, leg pain and numb patches but manageable. Back to work tomorrow although sick note lasts til end if the week. Got to just keep going on as normal. But can't shake a more general feeling of unwell ness

[Catper33]

Hi I am glad you have a way forward now and hopefully they will be able to get it sorted for you. It seems that one always has to fight so hard to be listened to and for appropriate treatment when its the last thing you need to be put through on top of everything else. I am lucky that here in NZ it seems I've had it easy with the medical profession- no real fighting needed.

My DS, also 6, became extremely clingy and would not leave my side and went from a happy, well behaved boy to a sad, worried and naughty child. He was told off at school for intentionally snapping all the classes pencils in half and was in tears about it as he had never been told off at school before and reacted in what sounds like a similar way to your DD. It actually was a catalyst for him really opening up to us about his worries. Previously when it was obvious he was sufferring it was always general coments he made about not liking it when my back hurt. He had never spoken about the one thing that really troubled him about the situation- 'Mummy was going to die soon as if you are poorly you die'. We worked through it and found a way to help him understand the process and outcomes.

I hope that the next appointments are positive and you don't need to use valuable energy fighting to be listened to.

[PavlovtheCat]

Oh well done for decluttering, hope you are feeling ok? glad your back is feeling a little better.

I have posted a huge epic thread about DD. I have not encountered 'trouble' at school so I don't know what is normal for teachers/what is to be expected from things like this at school, but i feel very upset for DD, and I am not entirely convinced that the right action was taken.

Hope you manage to sleep well. I might aid my sleep with a little Honey JD.

[PavlovtheCat]

lost it is the assessment team at the hospital, it is a team of senior physiotherapists and neurosurgery doctors who assess the patient's symptoms etc, review the MRI (order one in this case) and make a decision about whether the patient goes to neurosurgery team for spinal surgery to be discussed, or whether to send them to the Pain Clinic/back to Physio/both/all three. The GP can send me to the Pain Clinic, but this team consider if surgical route is to be considered, although does not mean it will be.

It is where I should have been sent a loooong time ago, and the only reason I knew about it was thanks to some MNers who advised me to look up the spinal pathway route on the PCT website, it shows the route the gp etc needs to take with back pain (primary care, spinal pathway, pain clinic etc). I was finally referred in August, quickly as a physio I was working with spoke to her senior boss and they between them persuaded my GP to refer me after a chat about surgical options and the young physio could not get me moving. They promised me a further MRI and consultation if the nerve pain did not ease/got worse after aggressive physio. I suspect he was hoping to get me out of the door, but physio actually made it all worse, although I can now stand straight. They just delayed the inevitable.

joyful I think it is just well, it has come on a bad day in terms of the impact of this all on the family, and I got the letter (hadn't checked post box) after DD got home from school, having been excluded from 10 mins of golden time due to continued talking in class/not listening to the teacher. Apparently it has happened a few times this week and the teacher has ben lenient but could not 'let it go' today (i personally think it is ridiculous to punish a 6yo for talking by removing her from her peers but hey ho i am not a teacher, I need to ponder it a little). I knew something was wrong when she walked towards me when she got home. She was absolutely distraught. She in her eyes has let me and daddy down, she was terrified that we (i in particular) would be cross and put her on the naughty step (not done that for years) and all sorts of fear. I saw in her eyes her anguish.

She has never ever been told off at school, never missed golden time or gone on the cloud. She is model student so to be in trouble she had no idea what to expect from anyone and was scared of what was going to happen. DH said 'i don't think I need to say anything do i?' and she burst into tears on him, asked him not to tell me. FFS it is not a huge deal. But I did not let her see that, I said we were a little disappointed that she had not listened to her teacher, but said that she has had her punishment at school (loss of golden time) and actually, she has been such a good girl that I was not cross, nor would I become cross unless she does not learn from it and try hard to not let it happen again. I hugged her so hard, wiped her tears and struggled not to let her see how much I was fighting back the tears. My poor baby girl. It took me a very long time to calm her down and she went to sleep just a little less, i don't know, bubbly. I just want to go and tell the teacher how unnecessary it was, I told her our situation so she could support her, and instead of doing that, she did something that has never ever been done to her before. The timing was shocking. And she was with another girl who lost the same amount of time - that girl had told a lie. That is huge!

sorry, so anyway, that has played on my mind, and once again I find myself tearing myself apart with guilt as to how much this is damaging her.

This weekend, not sure about plans. DH is working every morning, maybe visit some friends. Oh and finish DSs birthday party invites.

Pain - ok, bit stiff, sore, lots of numbness in one leg which is getting worse and creeping up into my buttocks, but it worse in the morning and night, eases in the day time a little.

Sorry for the epic post. How are you all? ok? hoping you are having a relatively pain free day, if that even exists.

[LostInWales]

That's good news then. How was your day today? I have to say I thought about you lot when I was doing my 'unload the dishwasher without bending forwards' routine. I must look hilarious to an observer.

Whats 'spinal pathway' by the way, sounds really promising.

[PavlovtheCat]

3rd december. 1st is a saturday, that would be strange, although my local MRI scanner does them on sundays from time to time

[PavlovtheCat]

got my spinal pathway appt in the post today, 1st December. Not MRI, guess they will make a decision for the millionth time there about the MRI, despite it being offered already by spinal pathway, and gp, but now back to spinal pathway and then more waiting. But, can't complain I guess. Least I am being seen now. Just worry that they will try to fob me off again.

Weird though, GP sent me some paperwork about it, said they would be in touch with me soon to arrange an appt with me, where I will be given the opportunity to choose my hospital, arrange a date etc. But, nope this letter tells me when, and where. Shame, as I didn't really want to go to this hospital, but it's better than nothing.

I feel less jumping for joy than perhaps I should. Just taking soooo long.

[PavlovtheCat]

oh, and I went out last night to a ladies night at a primary school of a friend's child. All arts and crafty stuff for christmas. I walked/hobbled past a reflexologist doing taster sessions, 20 mins for £5. So I had one! Oh my! lovely. Had a good chat with her about how it can help with pain, and in particular chemical pain. She spoke about how it can help to release the buildup of toxins in the body, and while it can't fix the problem it may help to alleviate some of the symptoms, or ease them a little. Also said it may help with some of the side effects of pain relief. Although keen to stress different people responded differently, some people have a lovely massage, some get much more from it. Yesterday was just a lovely foot massage really as she said normal session is 50 mins, and gives her time to think and learn about areas that need more work, in particular where I have numb areas/pins and needles. But it was so lovely. I am going back at some point soon for a full session £25! DH thinks it is all 'quackery' but who cares, however it might help is good enough for me.

[PavlovtheCat]

I am sorry too that we all have to have met in such unkind circumstances, but, I am very pleased to have met you all, I have met some wonderful supportive people on MN, who have opened my eyes to what I should expect from the medical routes, what my rights are, what to ask for. If it were not for some fabulous people I have met along my journey, I would still be struggling along, trying to work, taking meds and never have pushed for the MRI, diagnosis (if you can call it that) let alone the second MRI I am due to have. There are people like us who have come out of it the other side too, like vip and others on here, and they can give us hope that this does not have to be like this forever.

I continually do not understand why the medical professionals are ok to let people just fester, struggling. We are people, with lives, we are worth more.

joyful not sure if you are aware, might have told you before, so ignore me if I am repeating myself - I was told by spinal pathway last appt that if a further MRI shows surgery is not viable, they can do direct steroid injections to relieve in particular nerve pain but also localised pain. This is more effective than the caudal injections which are more 'hit and miss' as not so targeted. I am thinking this might be helpful for you as you can't take most of the pain relieving meds. I am going to push for this/localised patches as I don't want the side effects. I have had caudal injection with no success but had been told 50/50, where this direct injection is meant to be hugely more successful.

I have pain in my left leg again, numb patches and pins/needles are back, two toes are numb on left foot. BUT, I have a clear head. I can think straight (tramadol doesn't really affect me much these days, it's coming off that is the problem). It might sound daft, but I prefer to have that pain and my mind back.

losty I remember a time when I sprang out of bed without a care. I remember being able to sit and not get up slowly. Everything takes so much time and thought now.

[LostInWales]

Oh Joyful (Puddle? Jumper?) I don't know what to say . Everything you have written I could have written too especially the 4 extra stone now I've stopped exercising. It is very nice to 'meet' you but I hate that you are in the same situation too. It is fucking unfair.

I lost it at my beautiful 10 year old this evening because once again he had messed up all the football kit and lost his shin pads. He doesn't deserve me ranting especially not 'every time I tidy this it causes me pain and now I have to do it again because you don't think' and then run upstairs crying because I can't see me ever not being in pain in my life again and that really really sucks. My turn to whinge

Pavlov I found this passage;
' evil biochemicals called cytokines, which are spawned from the degenerated disc itself (especially the nucleus pulposus) which, because of the passageway created by the annular tear, come in contact with the nociceptive (pain producing) nerve endings in the outer annulus and initiate a painful inflammatory process' . I particularly like the bit about evil biochemicals . There was also this;
' The other thing that is important to understand is that some patients can have annular tears (especially construction workers or similarly arduous employments) without having any pain at all. It is still not completely understood why some patients suffer horrible pain with annular tears and others don't. It probably has something to do with individual sensitivity to the cytokines and/or the patient's own immune response to the chemical exposure upon the sinuvertebral nerves ' which I thought was particularly interesting.

[LostInWales]

It's very subjective as well, medicine is more of an art than a science unfortunately. DH had an MRI where they said he had something wrong in one place but a second opinion got him admitted to have the injection in a completely different place and within hours was walking around like a normal person again. They are very big into building a muscle core aren't they. I have one though, built it up years ago (it lives under the layer of flab that has appeared now I'm not allowed to the gym anymore) doesn't actually seem to do that good IMHO and it is certainly most unhelpful for the higher bit.

Do you think 'normal' people wake up and just get out of bed instead of tentatively working out which bit hurts most first?