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

(117 Posts)
Pavlovthecat Wed 07-Nov-12 09:27:24

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 wink). 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 Wed 07-Nov-12 09:34:39

ok, so I am not dehydrated, as I need a wee. I can't get out of bed. DH has given me my mobile phone and has his on him so I can call him from upstairs!
How bad is that!

smee Wed 07-Nov-12 09:37:40

You poor thing. Surely you need a strong anti-inflammatory? Tramadol's just for pain. Is your back spasming? A good anti-inflammatory can stop that and give you time to get moving again. Can't remember the one I used to take, but you can only get it on prescription. Saved me many a time though.

Why are you throwing up, do you know?? If you can't get to the GP, do the phone call. If that's a waste of time, go to A&E. You're not a fraud, you need help.

siblingrivalry Wed 07-Nov-12 09:41:35

Oh you poor thing- I have read your story. I have similar back issues, so you have my full sympathy.

Last time mine really 'went' I ended up with an ambulance here, as I literally could not move at all.
At hospital, I was given a pain-relief drip and a pain-killing pessary. So I would say that you need more intensive relief -I would recommend hospital. Could you get sent there via 111? That's what happened to me- the operator could hear me screaming in pain every time I tried to move.

When the worst is over, ask your GP about morphine patches. I had them for a month or so after my last episode and the provide continual pain -relief, so you don't get to the point where it's unbearable. They have to be short-term though, as they are addictive.

Good luck, hope you get sorted, I know how horrendous back pain is.

Get to A&E if you can, as Smee has said, it sounds like your back is in spasm, and you need a relaxnt to sort that. I know it will cause you extreme pain to get there but once they give you the right meds, the relief is immense

Pavlovthecat Wed 07-Nov-12 09:45:36

smee I usually take diclofenac, but as I am being sick and can't keep anything down, I can't take it, as even if it does stay down it will be on a very very empty stomach. I do have omeprazole to take with it, but I need to eat first.

I have a theory about the sickness, which is usually poo-poo'd. But, every time my back 'goes' for a short while before I feel a little unwell and then throw up. I have a theory that it is related to gunk leaking from the torn lumbar disc, and my body reacting to this 'toxin' in it's body, and then the 'toxin' triggers the muscle spams and sciatic irritation. But, hey, I am not a doctor and they really know the answer don't they? Sorry, I am grumpy.

But, this time it has just kept going and going. Can't be a bug. as everyone else is ok. I did think it was because after my back 'went' on sunday, I had eaten a little after throwing up lots so I followed my 'emergency' plan of pain meds including diclofenac and wondered if this then irritated my stomach.

DH is cooking me some porridge. I have had a (very very dark but quite long) wee so the liquid from during the night has stayed down, that is good as nothing was yesterday.

I feel like such a mess.

smee Wed 07-Nov-12 10:03:08

Diclofenac never cut it for me, Pavlov. Made me sick actually. Tramadol was a no-no for me too, as I had an allergic reaction to it.

Naproxen (anti-inflammatory) was pretty good for me. And for pain, Co-codamol. Have you tried those? Neither should be taken long-term, but they were great for sorting me out when I couldn't move. They got me mobile enough to get through it iyswim. I think pain can make you feel sick. I know it did with me. Hope the porridge stays down. x

Pavlovthecat Wed 07-Nov-12 10:42:46

i had napraxen for a short while was ok, then after a break, took it and was very sick on it. i have been on diclofenac since christmas, with a short break in april time. i do throw up from time to time since taking meds, never really figured out which of the meds is causing it, had thought it was the tramadol as it started around that time. maybe it's the diclofenac.

i had taken co-codemol up to 60/1000mg until aroung july/aug when gp swapped to tramadol as side effects were too much, taken it for too long. it makes me very irritable, but only if i have to function on it. if i am lying in bed in pain it works much much better than tramadol.

I have eaten a few mouthfuls of porridge. so far so good. DH said i need to eat half a bowlful before taking any more meds. although i threw up the tramadol etc i don't want to take more in case some was digested so i will take diclofenac and codeine (i have some straight codeine still).

I have cancelled gp appt and will talk to her on the phone instead at end of open surgery. if i go in i will likely have to wait for 30 mins plus to be seen, in a lot of pain, only to be told they can't do anything more.

If I am lying still, i am ok. and i can make it to the toilet, albeit on my hands and knees but nevertheless it means i can move.

Pavlovthecat Wed 07-Nov-12 11:20:24

so, this brown wee is worrying me. could it something to do with liver or kidney and not my back after all? hmm oh i don't bloody know. i know that I am sneezing (apparantly a withdrawal symptom from tramadol, who'da guess that?) and it is causing my back to spasm even further each time, I am having to brace myself from the pain and the sneezing is ended pronto with a yelp.

I am speaking to the gp on the phone in 10 mins. and i have held down the porridge, not quite half a bowl though.

Gigondas Wed 07-Nov-12 11:23:41

Just cos you are going to loo doesn't mean aren't in some way dehydrated. If you are on strong painkillers and been sick probably need more water to process it (certainly that has been my experience and advice that told to drink more to help process it).

And agree with smee that ring dr as cant carry on like this as you are suffering.

smee Wed 07-Nov-12 11:39:01

pavlov, I never managed to take anything long term. Could only manage one Co-codamol at a time and Naproxen if in dire need. Rest of the time I kept going with less brutal drugs like paracetemol and ibuprofen. I seriously think those heavy duty drugs should be avoided if you can.

Oh and should say my back was dire - no disc at base of spine, so everything rubbing together and in constant pain, couldn't sleep, etc, etc. I've had it fused now and life is so much better, so if surgery is an option, I'd take it seriously. I was a bit daunted, but it's honestly been life changing. smile

Hope GP is good on phone.

Pavlovthecat Wed 07-Nov-12 12:01:54

oh smee i wish surgery was an option. I saw someone from spinal pathway team who promised me another MRI with view to considering discectomy if leg pain/pins & needles/numbness continued (he said they were not so bothered about actual back pain) once I completed physio treatment. Done that, and my GP is stalling and won't refer me back.

I think part of that is in the back of my mind when thinking about if I should just present at A&E, let the doctors at the hospital decide if I need another MRI and then I will be back in the hospital system. I was under the impression that surgery would be very seriously considered if conservative treatment does no work after 6 weeks. Ha! It has been 10 months of serious pain, not to mention the times before that when it went badly for weeks at a time.

My l5/s1 disc is badly dehydrated and apparantly soon enough it will disappear altogether (yey! seemed to think the spinal team, nothing left to protrude), so I am guessing that is why they don't want to remove any of it, they want to wait for it to disappear on it's own, but then I get the same problem you had. That must be so so so painful having nothing holding your spine in place, rubbing together. Glad surgery has eased it somewhat, has your mobility/flexibility reduced much with the fusion?

smee Wed 07-Nov-12 12:11:41

Pavlov, push like crazy for referral back. Your GP's being useless and it makes no sense, as if you've already been seen by the Spinal Team, they shouldn't have discharged you, so you shouldn't even need another referral. My path to surgery was:-
GP - physio - Neurosurgeon & MRI - spinal block injections (all failed for me, but worth a try) - another MRI - finally surgery. All took over two years, but definitely worth it.

If your disc disintegrates then it's pure mechanics and it's a no-brainer. NHS were fab with me, but it took time and lots and lots of me being pro-active. I did things like found out the Consultant's secretary's phone number and called her to gently push appointments. Whenever you see the Consultant, ask what you can expect next/ what the likely outcome of whatever they're doing is/ what the timescale is on it all/ when your next appt will be/ can you make it now so it's in the diary, etc, etc. That way you can chase if that doesn't happen. It's amazing what a difference it makes if you say to GP/ Secretary or whoever that the Consultant told you something.

Good luck!

Pavlovthecat Wed 07-Nov-12 12:26:57

smee my route so far has been drs (a lot), referral to osteopath (mostly useless) for 1 x caudial injection (did not work) then MRI. Told the MRI showed that surgery was not viable. Cue the back going badly, referral to physio, physio calling my GP and insisting he refer to spinal pathway, spinal pathway conceding disc could have prolapsed further/another one might have gone etc, back to physio to get me straight then back to them via gp. And now I am stuck.

I don't know why the spinal pathway team discharged me. I think he thought that once I was standing straight it would all sort itself. He was also dead against spinal fusion. My local hospital doesn't do it as they don't feel it is effective enough, but they can refer onwards. This guy said that if/when my disc finally disappears, it would fuse itself together on its own, in time. He seemed to think I should wait for that to happen.

I am going to insist on a new referral today. This GP is not the one who initially referred me to spinal pathway team (albeit when physio insisted due to my pain levels), this GP has indicated I should accept pins and needles and some numb patches over spinal surgery (and a shit load of drugs).

well. the porridge has stayed down, the gp has not called. I am going to take some codeine.

Pavlovthecat Wed 07-Nov-12 12:29:48

and for some reason I can't get a referral to pain clinic either. This GP says, we can medicate here first, if it does not work, then pain clinic, where the spinal pathway team said, if no further action was needed from them I should go straight to pain clinic. He also told me that at the pain clinic they can give me direct injections that are more accurate than caudal injections which are hit and miss (and pointless he feels).

Why would I want to be on amitriptyline, and all the other crap I am taking when I can have a direct nerve blocker with little side effects? I stopped the amitripyline last week, not taking it anymore, I can't take the side effects. DH wonders if this is why I have been vomitting as I did not slowly come of it (only 25mg)

Pavlovthecat Wed 07-Nov-12 12:35:52

the spinal pathway team bloke that i saw was very clear about the two options. He said my route once finished with physio was further MRI and then depending on what that showed a) into neurosurgery team to consider surgery b) pain clinic for more direct and effect pain relief than the primary care route can offer.

I might call the consultant up at the spinal pathway team. See if they did in fact discharge me and if I can find another route.

My daughter was in tears this morning before going to school. She said 'mummy I don't want there to be such things as poorly backs, or being unwell, i don't like you being sick it makes me cry' and I said to her 'it won't be like this forever poppet, it will get better one day I promise' and she said 'it doesn't feel like it is mummy, it has been forever already'. She is 6. And has gone to school in tears because of this.

And Dh has had to take another day off work to look after me and the children as I can't do a damn thing.

And the doctor hasn't called me back.

smee Wed 07-Nov-12 12:41:01

God Pavlov, poor you. I'd ask for a second opinion, as my team told me fusion wouldn't happen on its own and the long term nerve damage of things being impinged on is a worry, let alone the on going pain. Ask to go to a big teaching hospital, they're far more up to the minute.

Or here's a thought, but you could do what I did. I was referred to a top Surgeon, but it was a 3 month wait to see him, so I found his private clinic on-line and went for a consult. Cost about £200 from memory. I took my MRI with me on a disc (hospital should let you have it if you ask). He straight away said I was urgent and took me back under his wing under NHS. If you can afford it, I'd say money well spent.

In the end, I had a relatively new op called Axialif - it's done more in the US. It's a single pin which is drilled up through the spine and sits between the bottom two vertebrae holding them steady. The bone then fuses round the pin. Less invasive than normal spinal fusion as it doesn't go through tissue, so worth a go if a) they do it and b) you're a candidate.

After two years of intense pain, tbh I can't remember if I'm less flexible than I was before. Life without all that pain though is fantastic, so who cares. smile

Pavlovthecat Wed 07-Nov-12 13:01:47

thank you so much for the advice. what i need first and foremost is another MRI. as the other one does not show evidence for surgery, I saw it and it was explained to me, there is a prolapse but not very big, and a small tear. But, that was from May and in June it went in a major way and it has been since then that I have had the serious nerve pain, even when my back has been ok. I need the new MRI so that if I am not happy I can do as you say and take it further somewhere else. The nearest hospital that does spinal surgery is a teaching hospital I think (exeter royal infirmary, will go and google).

I would happily spend £200 on a private consult.

Pavlovthecat Wed 07-Nov-12 13:15:35

good news: I have held down porridge, and now some bread and yucky tinned soup (well, i dipped the bread in the sauce of it). So codiene and maybe some sleep here we come!

bad news: in the 10 mins it took for me to get downstairs for my food (I wanted to try moving) and remembering that my phone was upstairs and DH went to get it, I had missed 3 calls from her as it was on vibrate. Doctors surgery is shut this afternoon for training, luckily she is on call and said I can call the emergency out of hours surgery number to talk to her.

Pavlovthecat Wed 07-Nov-12 14:27:17

I spoke to GP. I insisted on a referral to spinal pathway. I was in tears to be honest, i told her I simply cannot go on like this. We talked about the vomiting, she asked a few questions, luckily I have eaten something since this morning so by the time I spoke to her I was not dehydrated enough to need even more meds (anti-emetics). I told her felt that the vomitting was linked to the back problem, either due to pain, or issues with the meds and she agreed. She said now I have eaten then I need to take painkillers again.

She read through my notes from spinal pathway team, and it states clearly that if no improvement after physio for 2 months, MRI with view to surgical route is required.

She agreed this has gone on too long (but, so did her colleague months ago) and will do the referral this afternoon, and try to fast track it.

smee Wed 07-Nov-12 14:37:59

That's progress then. Just keep on at them. My GP sneakily told me crying and saying you were depressed was the best way to get bumped up the waiting lists. Hope they see you soon. smile

Oh Pavlov my love, I was hoping this wouldn't be you! sad Well done for managing to eat a little, I hope that the GP does as she says and gets you that MRI asap.

But tbh, if you haven't improved by the end of the day (or tomorrow morning at thelatest) I would go to the hospital. You can't carry on like this.

Pavlovthecat Wed 07-Nov-12 14:54:09

I will puddle. I had been back at work for two weeks as well. DH and I had serious discussion about hospital today, he will take me whenever I ask and has told his employers this may happen so he may not be in work on friday (took today off, not due in tomorrow, shifted fri/sat/sun). How are you my lovely? We can sort of guarantee that threads about back problems etc are going to one of a handful of us eh?! Have you had your physio? How about your MRI? feeling any better?

smee gp thinks I am depressed already. She gave me amitriptyline to help with this as well as nerve pain I am sure. She had a 'talk' with me. I am not sure if I am. Probably am and how wouldn't be? She did say she wondered if I was never discharged from the spinal pathway, even though physio team told me I would need to go back via them. She is probably going to call and I now have the name of the person I saw (i could never remember).

Pavlovthecat Wed 07-Nov-12 14:56:36

oh and I agree with crying helping! i found that out a few months ago when I went to see my gp after having had enough and just cried my eyes out. that got me the referral to physio. I then balled my eyes out in front of the physio, then her boss, then bam! referral to spinal pathway. It seems that if you appears to be coping even just a little, they will send you away. Unfortunately I have given the impression of coping just a little because I have had some nice fluffy drugs that took away my fire. I still had the frustrations, but no energy to fight it.

I spoke to the head physio on the phone, she took my history and referred me straight on to the spinal team. grin So at least I don't have to go through physio yet again. I have the MRI on the 24th and then an appointment with the consultant on the 17th December to discuss the scan and whether there are any treatment options that I haven't already tried.

He's a bit of an arse though - he told me last time that he was referring me for an MRI against his better judgment because after 16 years I'll always have pain so what do I want him to do about it? hmm I was less than impressed.

How are you feeling this afternoon, did you manage to eat/sleep any more?

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