Hi All, I’ve been on prescription co-codamol for some time now, for musculo-skeletal pain associated with MS. I also have neat codeine for use as an ad-hoc top-up, so that I can vary the dose when things get really bad. This was all working rather well…or so I thought. Paracetamol on it’s own does nothing; neither does ibuprofen. So it’s definitely the codeine that does the trick. But recently, I’ve started to have doubts. Lately, I’ve not been feeling very well. The sort of generalised “not well” that I assumed to be just MS. I’ve not been sleeping through the night, and I’ve been feeling generally a bit queasy and headachy, and had a rumbly tummy. A couple of weeks ago, I had an episode of severe vomiting, and was very poorly (off work). I wasn’t entirely convinced it was a bug, although I suppose it might have been. Anyway, now we come to the point. Although I hadn’t made a direct connection between these symptoms and any medication, I think maybe subconsciously I had. Because lately, I found myself reluctant to take my co-codamol. Luckily, I’ve had a reasonable (not brilliant) few days pain-wise. So I decided to experiment with not taking them. I’ve taken no co-codamol at all for over 48 hours. Yes, the musculo-skeletal stuff is worse. But offset against that, the incipient headache is gone, and I no longer feel sick! And I’ve had two nights in a row of sleeping almost (not completely) straight through. I do know that codeine can be associated with headaches and nausea. But it’s also damn good at fixing the pain (the non-headache pain, I mean). So now I have a dilemma. Do I put up with the pain, or with the headache and feeling sick? Or is it all complete coincidence anyway, and nothing to do with codeine; just the natural ups-and-downs of MS? I’m feeling between a rock and a hard place. :? Tina
I have solpadol (30mg codeine 500mg paracetamol) for my Pain mangagement and also 10 Mg/h Butrans patches. However I can only take the codeine for a few days continuously as it wrecks my sleep and makes me into a gibbering mess. I also have to uses lactulose if I am taking the codeine as well. I find not so much upset tummy but I do get headaches and a general feeling of being washed out. I have spoken to both my GP and my neurologist about this but as we have tried just about every pain releaving tablet and potion going, the regime we have now is the best we have managed. I should also point out I have Sativex, whilst that is not strictly speaking for my pain it does help when I am not taking my codeine. I rate my Butrans patches very highly, so it might be worth asking to see if you could try them… Hope you get sorted soon. Strudders.
Hi Strudders, Sorry - I did do a long reply to you, right before the board went down (again!). I’ve lost all my typing. Really haven’t the heart to start all over, but just wanted to thank you, and say that yes, I’ve realised any solution will be compromise. Might try a few days on, a few days off, with the codeine, and see if that works. Maybe I just need a periodic detox. Glad you’ve found a regime that’s working out OK for you. Tina
I found that co-codamol (15/500) made me feel really quite ill so I’ve stopped using it unless I absolutely have to. The rest of the time I stick to paracetamol, but two is rarely enough if my back or head is bad so I do rather overdo the dosage. Not sure what that’s doing to my insides, but at least I don’t feel like cr@p! Karen x
Hi Karen, Clearly it’s not just me then! In a way, I’m relieved, because I’d assumed all this crappiness was my MS worsening, but it seems it may have been what I was taking to fix it, all the time. I don’t know if it’s possible to develop codeine intolerance over time, because I seemed quite OK to begin with. Maybe I just need a break from it. But I suppose the dose has been creeping up a bit, as the aches and pains got more problematic, so maybe I’ve finally reached my limit. 
I gave up worrying what any of it does to my insides, long ago. Like you, I had concerns over long-term use of paracetamol. But my doc assures me it’s safe, in a person of normal weight and health - normal apart from the bl**dy MS that is. Contra-indications would be if the person was anorexic (so not just skinny, but seriously underweight) or had pre-existing liver problems. Apparently, if neither of those applies, you can metabolise eight x 500 a day pretty much indefinitely (though not all in one go, obviously 
) T. x
Hi Anitra, I’d just be wary of it’s addictive effect and only take it when you ARE in pain rather than in advance of being in pain (does that make sense? My head is pretty mashed today :? !!). I have and do work with people whose mental health has been severely compromised by their addiction to codeine based over the counter and prescription only medication. Could you ask to be referred to a Pain Clinic to see what alternatives there might be? Hope you find something safe that works for you 
Hi Anu, Unfortunately I’m always in pain, so taking it as a precaution doesn’t arise. I’m not using it recreationally; they are prescription meds I was supposed to take daily. Addiction is very low on my list of worries; I’m not even sure it has meaning, in the face of permanent, intractable pain. My dad, during his final illness, had to take morphine all the time. But nobody would claim he was a morphine addict. You have to do what’s necessary, don’t you? But anyway, far from getting addicted, it looks as if my body has gone completely the other way, and decided it will no longer tolerate them. What a complete bummer, as they’re the first thing that has actually helped. I’ll try just giving them a break, to see if that helps. T.
Yes I too have problems with codeine based meds. I got my gp to prescribe the ones with small amounts in but more paracetamol and Im fine with those. My symptoms were passing out, shaking, temperature soaring, felt like I was drifting off all the time. Not good. You are not alone and there are lots of different doseages of them, try asking for the ones I have, you will hardly notice your taking them plus they do the job better. bren xxx
yawn wrote:
Yes I too have problems with codeine based meds. I got my gp to prescribe the ones with small amounts in but more paracetamol and Im fine with those. My symptoms were passing out, shaking, temperature soaring, felt like I was drifting off all the time. Not good. You are not alone and there are lots of different doseages of them, try asking for the ones I have, you will hardly notice your taking them plus they do the job better. bren xxx
Hi Bren, Thanks, but the problem with the smaller dose (which I’m already on) is they’re not always enough. Which is why I was given a separate codeine top-up, so I could increase the codeine without being over-the-limit for paracetamol. But now it seems like the codeine doesn’t agree with me any more (on its own, or with paracetamol). I didn’t realise it was making me sick until I gave it a miss for a couple of days. I’d been blaming the MS! Tina x
Hi Tina! Thanks for the reply. Just out of interest what are your codeine dose’s? and have you tried Tramadol? Also defo think a out asking for Butrans (buprenorphine) I have found them excellent and they are boosted by taking either paracetamol or codeine. The main benefit for me was it’s a 7 day patch so no need to worry about taking pils… Really hope you get this sorted as I know what it’s like being in “pain med limbo”. Strudders x
hi tina tried to post reply but lost it , lets see if this one works. mandy x
hello again, i used to take co codamol daily and it really helped me but then all of a sudden my stomach started playing up, like you say feeling nauseous, headachy etc. at first i could take them at any time of the day, then i could only take them after a good meal and then i couldnt even take one let alone two. since then my stomach problems have got much worse with acid reflux problems. i also have become very sensitive to penicillin and they make me immediately sick. so strange i think. anyway am still undiagnosed but not waiting and hoping for an explanation as its just detrimental to my health overall. best wishes mandy xx
strudders wrote:
Hi Tina! Thanks for the reply.
Hi again, The co-codamol are 8/500 - up to four lots of two in any 24 hours. I rarely take all eight, although it has been known. The codeine phosphate (“codeine”) are 15mg. These can be taken instead (to give me a little break from paracetamol) or as well, for days that are particularly bad. I rarely take the maximum permitted of any of it, but it’s got to the point life’s pretty miserable if I try to make do without them. I always have to have painkillers in the house, at all times - and in my handbag, if I leave the house. I know this might sound to some like an addiction, but it’s genuine need, and not craving. I thought the regime was working fine, and I was tolerating it well, until, just recently, I began getting sick and headachy, and not sleeping well. I assumed my MS was worsening, but never thought my painkillers had anything to do with it. The light only dawned when I gave them a miss, and immediately had a much better night, and woke up feeling less sick. But the price I’m paying is the pain is really now quite bad, so I’ve swapped one problem for another. I’ve got some ibuprofen slow-release to tide me over (these were non-prescription), but they aren’t as effective, and aren’t as safe long term. I’m not sure whether to try again with the codeine, once things have had a chance to settle down, or whether that’s definitely it for me now, and I’m unable to take it any more. I’ve never tried tramadol; I’m led to believe it’s a similar mechanism of action, so if I’m getting sick on co-codamol, I probably would on tramadol too? I’m not sure about the patches, as they sound a bit drastic. As someone has already posted today “needs must”. But bearing in mind I could expect to have this condition for another 30 or 40 years before I pop my clogs, I’m a bit worried about going in too early with the pain meds, in case I have nothing left for if (when 
) things get worse. I guess I’ll have to have a chat with the doc. Maybe it’s something as simple as I need to take a glass of milk before the codeine, or something. Tina
mandymary wrote:
hello again, i used to take co codamol daily and it really helped me but then all of a sudden my stomach started playing up, like you say feeling nauseous, headachy etc. at first i could take them at any time of the day, then i could only take them after a good meal and then i couldnt even take one let alone two. since then my stomach problems have got much worse with acid reflux problems. i also have become very sensitive to penicillin and they make me immediately sick. so strange i think. anyway am still undiagnosed but not waiting and hoping for an explanation as its just detrimental to my health overall. best wishes mandy xx
Hi Mandy, There’s a voice from the past! Glad you’ve made it to our new home alright! Yeah, as you say, it seems relatively sudden. I always thought I was tolerating them well. But it seems my body has finally said: “Enough!”. I’ve been on them about 18 months, I suppose, because I think I started before I had a confirmed diagnosis, the same as you. Funny how it took all this time before I got any side-effects. Hope you’re OK otherwise? Really still no Dx? Are you any further forward? Tina x
Hi Tina, I can’t take any more than 10mg of codeine or I have to lie down and have a sleep. It makes me feel vile, nauseous and out of it. I’m sick to the back teeth of taking things that make me feel worse. So much so I’ve taken myself off pregablin, which I was taking for TN because it makes me feel nuts. Just taking d3 at the min and due to start Rebif tomorrow. I’m going to stick at that though, regardless. Hope you find something to help soon. Take care Suz xx
Cheers for that. You are right, Tramadol, Codiene and Butrans, all work in the same way. They are opioids and work on the opioid receptors. However the patches start out small at 5 ug/h which is equivalent to the codeine dose you are taking. Me being a big fella take 60mg codeine as a dose… However I defo think you need to talk to your doctor, also request a pain clinc appointment (as has been mentioned) if you are intolerant to opioiod drugs then you will have to look at your regime and the meds you take. Main thing is don’t worry. I took a fair old time for me to get sorted. I am not a fan of codeine for a number of reasons but needs must and I use it sparingly. However there are lots of other analgesics out there that I am sure will suit you. Best of luck Tina andre us know how you get on! Strudders
Anitra wrote:
Hi Anu, Unfortunately I’m always in pain, so taking it as a precaution doesn’t arise. I’m not using it recreationally; they are prescription meds I was supposed to take daily. Addiction is very low on my list of worries; I’m not even sure it has meaning, in the face of permanent, intractable pain. My dad, during his final illness, had to take morphine all the time. But nobody would claim he was a morphine addict. You have to do what’s necessary, don’t you? But anyway, far from getting addicted, it looks as if my body has gone completely the other way, and decided it will no longer tolerate them. What a complete bummer, as they’re the first thing that has actually helped. I’ll try just giving them a break, to see if that helps. T.
Wasn’t suggesting for a moment that you had addiction issues :o - just be aware of it so that you didn’t get drawn into the pain - need codeine - pain cycle and perhaps consider alternatives via a pain clinic.
Hi Tina, Codeine is well known for causing what is known as rebound headache. Basically it is a form of tolerance. As your body becomes accustomed to the drug you will develop headaches, nausea and other pains as a result of NOT having it. Most Drs are very reluctant to prescribe Codeine on an ongoing basis because of this. The best management method for on going muscular-skeletal pain is to take plain paracetamol every 4 hours whether you feel you need it or not. Don’t wait for the pain to build up. If you take the paracetamol regularly you should be able to prevent the worse pain developing and then if it does flare up you should need only take one small dose of the codeine to get the pain down again. It will take a few days of putting up with worsened pain as your body readjusts to this regime but tit will be far more effective than taking codeine when the pain has become severe. And definitely get in touch with a pain management clinic. I am seeing a pain management counsellor now and she is brilliant. It is all done without any drugs but by using bio-feedback and meditation types of methods to control the pain. Good luck. Belinda
Thanks Belinda, I really do appreciate the thought you’ve put into replying, but I guess I must just be perverse, because no, the headache is very definitely associated with having the codeine, not with NOT having it. As proof of this, I stopped cold turkey on Saturday, and have not had a headache, nor any nausea, ever since. Yet if I go back on them, I’m sure I’ll start feeling sick very soon. The reason I had codeine in the first place was that paracetamol on it’s own does literally nothing for me. It never has. Way before MS, paracetamol for period pain etc. never used to work for me. I respond much better to ibuprofen, but that’s not OK for long-term use either, because of the risk of intestinal bleeding. So they’re alright as an occasional tide-me-over, but not as a permanent fix. I’ve taken no painkillers at all since Monday (not just codeine, but any of it). I’m undeniably in more pain, but at the same time feel better too, if that’s not a complete contradiction! I’ve been sleeping better, feel a lot clearer-headed, and most importantly, less sick. But of course, the downside is the increased pain, which is not easy to live with either. So looks like I have to choose. Which will I put up with? The painful feet, achy torso etc? Or the nausea and headache? Since it doesn’t seem possible to be free of both, looks like I have to suffer one 'til I get fed up with it, and then switch to the other for a change. The only good thing to come out of it was I’d assumed all this sickness business was my MS progressing, but it looks like I’d simply developed an intolerance to my painkillers. So the MS isn’t as bad as I’d thought it was (still yuck, just not doing everything I blamed it for). That’s some consolation I s’pose. Tina x