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]

me neither dilly, But, i really do have to get my shit together. I keep wallowing. I am going to start by going to the gym most mornings for quick swim and spa. can't hurt. No more drugs. I am not doing it. I will stick with tramadol as i need some pain relief, and diclofenac as anti-inflammatory, omeprazole to ease my stomach. No more drugs that send me loopy and stop me living. I said to DH today, maybe it is better to find a way to live with the pain and for the children's memories as they grow to be mummy with a crutch and sometimes had to rest a lot, but always laughed and was happy, rather than 'mummy was always out of it, and her moods always changed, i remember growing up with a sick mum' i don't want that. it is scaring the hell out of me.

And I have no idea why i threw up again, but my meds all came up. again.

Did you enjoy BlogFest?

[LostInWales]

Awesome blog post re that Jones woman (sorry I honestly can't remember her first name at the moment) we do not look our best when we lash out at people. Sorry

Sorry you are having a crap time Pavlov. I have started not reading side effects and just seeing how I go, normally I go 'ugh I hate feeling fuzzy/sick/pooing blood' and stop taking them but I try . It is so frustrating, you feel that there really should be a good safe painkiller that you can take without all the shitty side effects. It is NOT fair. I don't know if it is helpful finding you lovely people who are in the same situation or if it makes me even more pissed off that there are so many of us and still no one seems to be really bothered about doing anything.

My next great hope is physio, there is a good back physio in the next village and I am sodding well paying for it was he is the only one and he's private. Swimming gently sounds like a great idea, the warm shower sounds even better . I am puzzled as to why you are being sick, are you withdrawing from anything still or taking anything new? I have been sick and grim today but I ran out of my Omerprazole so I would imagine that is just the logical progression of untreated reflux! Thank you NSAIDs, I can't take you anymore but still you wreck what I can eat and drink. Joy .

[Madsometimes]

Pavlov, I'm so sorry that you are still going through all this. It's completely bollocks that you're still in so much pain and dependent on horrible drugs with side effects. It makes me so annoyed.

The gym sounds great to keep you moving at your own pace. It's just so unfair that your own pace was kayaking until very recently. If it takes surgery to get you back again to even a fraction of your old self, then it will be worth it. Your GP must refer you to an appropriate consultant. Maybe as others have suggested, it may be worth a private consultation just to discuss options, and see what treatment is available.

I lurk more than post ATM. I'm feeling so much better, I feel like I have my life back. I want the same for you, and have to be optimistic that you will get through this.

[DillyTante]

Awww pav, really shit for you :(. You have to do what's right for you and the kids. I really hope it's not a long term thing and you can be you again.

Thanks btw LostInWales :). BlogFest was great. Real #powerofmumsnet moment. Lots of food for thought. Caitlin Moran was totally worth sitting through the Liz Jones car crash!

[PavlovtheCat]

Morning everyone.

Today is indeed a better day joyful. I did what I planned. I got up with the family (ok, 20 mins afterwards, but close enough!) I had a small bowl of alpen, sip of coffee (for some reason coffee is not going down so well atm), then back to bed for 10 mins to take meds and recover from getting out of bed!. Then, forced myself up again so DD did not have to come to me in bed for her hair to be brushed. Did her hair, cleaned the kids teeth, sorted out DDs collar etc, waved them off at the door.

Then, DH and I went to a lovely little cafe near the sea, and had breakfast. I ate beans on toast and both that and the alpen have stayed down. Then to the gym where I did 10 lengths. admittedly those lengths are only 20m each, but still, some on my back, some breaststroke, nice and slowly. 10 mins in the sauna, no spa pool as it was packed for some reason. Then 20 mins sat in the shower, shaved my legs. And now I feel almost human.

My back feels so so much better for the little bit of water exercise. I am going to this every morning for now and try to get there earlier each day so I can get there before work when I get back there. I used to go at 7:30am 3 x week and get ready for work there.

DH is a bit concerned that maybe I should take this new medication. So, over breakfast we had a chat, and agreed that as I have been so unwell this last week I need to get my body back on track, get eating 3 square meals again, keep exercising, get my digestion moving properly again, get rid of feeling of sickness, take the meds I have. I agreed that if, in one week I am not in some control of my pain then I will try it, as long as every other aspect of me is feeling ok.

I hope everyone here is feeling ok today and has some respite from their pain.

[LostInWales]

Pavlov that's brilliant, so glad you had a good day. Now don't laugh but there's no chance you could be pregnant is there? . Just the nausea and increase in pain. Probably the most stupid question ever. Ignore me.

I am in burny burny pain unhappy place but we went to an open evening at Ds1's school last night and there were so so many flights of stairs, all concrete and harsh to walk on. Sod the spoons I think I chucked the whole cutlery drawer out . Was lovely though and DS2 will be going soon so very reassuring to see everything.

Yay for toys to Romania, mine are banned from anymore stuff until they take some things to the charity shop.

[PavlovtheCat]

joyful aw that is just the loveliest thing for your dd to do! And nice that you gave her the choice. Sorry you are suffering as a result though.

losty that has entered my mind briefly, as, if I were this is exactly how I would be, have been with both pg so far, and with ds. From like 10 days post conception I threw up many times a day throughout, had to have medication to help ease it, the smellof coffee and alchool made me throw up, like this past week. BUT, I have the contraceptive implant in, which is allegedly 100% fail safe if put in properly, and I have had in it almost 2 years. And several of my friends have gone at me too! I am pretty certain I am not pg. actually, Dh asked me if I had the implant taken out, as we had discussed me doing it, wonder if that was why he asked? !

[giraffesCantLightFireworks]

Oh Pav I remember well you being preg! So pleased you managed swimming etc :)

ps have you tried ginger biscuits?!

[PavlovtheCat]

giraffe you best run fast so I can't catch you

I feel soo much better today. I can't believe how much. Last night a friend of ours came over, and stayed until 9pm, then I stayed up until 10pm and felt good, not knackered, in horrendous pain, just some leg pain and was starting to hobble but nothing awful. DH was quite sweet and said that maybe I should go to bed then while I still felt good so I did not fall into bed shattered like I have been doing for a long time, maybe I would get a better nights sleep. So I did! Admittedly I went on the 'net for 30 mins, i like doing that before I sleep.

This morning, my back is not spasming, just stiff and sore, I can deal with that. Oddly the numbness and pins/needles is increasing once again. Not surprising as I stopped the nerve blocker, but in the mornings, it goes from my toes, up the back of the leg, into the inner thigh and a bit around my groin area. But it clears as the day progresses to just in my calf, and in particular in two of my toes. feels like when you have been playing in the snow too long.

DH is so much more supportive, had a few heart to hearts and although he can still be a selfish git, mostly when a particular friend is either around, or has been around him, he is much improved. I think, secretly, although he won't admit it, my blog helps, as he reads what I am thinking/feeling and also other people's responses, and it is harder for me to speak to him face to face, he gets defensive sometimes. I do still find he acts more like a carer than a lover sometimes, you know, he will change the bed so it is clean and comfy, but where, once upon a time he would fluff my pillows and give me a kiss if I was poorly, he doesn't do that anymore. Or when I was throwing up, he would empty the bowel, get me water, and a damp cloth, but once upon a time he would stroke my hair/back, sit on the end of the bed and hold my hand when I am in pain. It makes me sad, but I guess, with being ill in my pregnancies and now this, he has just run out of those little personal things. And I shouldn't complain, he does a lot.

I am off to the gym again today. Not going mad, keeping it like the last two days, gentle swim, nice and slowly, spa/sauna, and maybe a coffee/newspaper in the cafe after.

[LostInWales]

Brilliant, gently gently now so you don't set yourself back and hopefully you will have little improvements every day. I'm sure if you have more lovely mornings with DH like you did yesterday you will refill his caring/sympathy bar up again (sorry with 3 DS' I tend to think in video game analogies)

I got my MRI results today and I have one bulging disc and one with an annular tear. I'm not sure what this means but I will book my physio today and start getting on with it. I'm used to having bones that are wrong to it is novel to have interesting discs too. I had a quick google and there was a mention of 'chemical pain' so your senior physio knows what he's talking about then.

Sending out warm wheat bags to everyone with a sore back

[PavlovtheCat]

lost will you get a chance to talk through your MRI results with anyone, a consultant or doctor, did you see the MRi, or just the report? I found it was all just words on paper, no-one explained it at all until I got to the neurosurgery team, but that was not due to the MRI, that was due to my physio not having a clue what to do with me due to pain levels. What disc is torn? does it say what kind of tear? is it the same disc that is bulging? does it mention foramal narrowing/end plates etc? mine told me all that stuff!

joyful pregnancy was not kind to me at all. No sir. second was worse than first. I put on 7lb in total by the end of my pg. DS was 7.5lb ! She is better today, noticed I was not sick yesterday, she is happy when I am happy and coping, but when I am not well, she crumbles completely. I think we are very lucky we have not had behavioural issues around it, but I have noticed she is getting more aches and pains, belly ache, sore throat, legs feel achey, head hurts etc and wanting more reassurances around these things.

[LostInWales]

I got a letter to give to the physio so outlining what he thinks is causing the pain etc. I have L4/5 bluging to the left and L5/Sacral disc with the all round bulging and annular tearing. He doesn't think they are too significant apparently. It is very frustrating as all he mentions are discs and I know I have severe degeneration in the bones and that has caused me a lot of pain for 10 years now. Why is it you feel they are just not listening to anything you say? I know that there is nothing surgical to be done but I might have some facet joint injections. Sadly I can only have them in the lumbar spine though. It was interesting though, I do wonder now if the really burning pain I feel low down is the chemical pain you were talking about? I am 'lucky' in a way though because I can get about day to day unlike you when you are bad. Bad days I can't do much but I cope. Plus this has been gradual since I was 16 so whilst I get so fed up not being able to exercise much and do things, unlike you I have had lots of time to get used to it. I can't imagine kayaking one week and being crippled the next, your brain must still think it can get around and bounce about. Bastard backs, we still have a lot of evolving to do to cope with being upright and having big heads

[PavlovtheCat]

I hate it when they say 'not that significant' they said that to me from my May scan. Really?! Well you try being me for a month and then say that! Because, in reality some people can have a horrendous bulge, in just the right place to not cause too much pain. Or, a relatively small bulge in just the wrong place. So the size is pretty irrelevant. And, in terms of chemical pain, that is the tear I am certain of it.

My physio (not the senior one) tried to get me to do pelvic floor exercises, not giving me a sheet with them on, but using my valuable physio time 'practising'! I was like 'i have two children, I read the sheets they gave me in hospital, can we spend 20 mins doing something more productive?' I stopped going after that, as well, pelvic floor exercising is not going to fix my discs.

[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?

[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.

[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.

[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]

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]

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

[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.