Hi its me again, I was just wondering if everyone else is living on painkillers, is this a part of living with RA ? surely its not right to be taking the max amount of painkillers every day for weeks on end. i'm beginning to feel like a zombie !!
Wendy xx
Hi Wendy,
Everyone is different in how much pain they suffer with, I've had RA for around 4 years, I spent the first year taking tramadol and naproxen and was always chasing my next lot off pain medication, my doctor had been trying for a while to get me to switch to morphine but I was worried about getting addicted to it, however I then ended up in hospital with costcocondritis which is inflammation off the rib cage, and I really couldn't cope with the pain, I was given oramorph to help, when I realised I wasn't high as a kite from morphine I was more willing to try it.
So my doctors gave me slow release MST morphine tablets I take twice a day 12 hours apart and if my pain gets worse inbetween I can use the oramorph as required, I also take pregablin for my pain too, however I don't know how much off my pain is RA how much is Fibro and how much is DDD, but I do know since starting the slow release morphine I'm not forever chasing my next ease from the pain like I seemed to be with the tramadol.
However a lot off people get ease from there pain after there RA drugs start to work for them, I'm hoping that will happen for me soon too, hope it does for you too.
Julie x
Hi Julie, things still sound very bad?. the infusions arent helping?. excuse my ignorance but what is ddd?.. my consultant is now considering some connective tissue disorder involvement for me?
Yep Wendy me too, I can't manage without them at the mo. I'm waiting to start Cimzia but my RA has flared really badly since having to stop Mtx and Leflunomide and I couldn't get through the day without painkillers. I really hope the new meds will put pay to that and the sooner the better.
When you stop to think about every pill you pop on a daily basis it's quite scary. I wish you well soon.
Mags x
I do feel for both of you very much. For myself I do feel pain - lately its been in my lower back and in my gut, but I don't think either are because of my RA and I don't take anything for them - partly because I fear every drug now I've had 3 weeks of severe tummy pain - but mainly because I don't really need them. I agree that we all suffer very different amounts of pain but I think a lot depends on how much pain we have experienced during our childhoods and lives in general - how we cope with pain as individuals. I'm reliably told that you can have active RA without experiencing much pain and you can experience intense pain without it causing damage. This feels unnatural because we want to trust our bodies to warn us when bad stuff is occurring doesn't it? But then some cancers cause no pain until very advanced.
In answer to your question no I don't think it is right to be in pain all the time. I think we should expect to have relief from pain periodically if not completely all the time. I am often pain free although I don't always feel well enough to really appreciate it to be honest! X
yes i do too and have done from diagnosis. only time i didnt was when i was on steroids. naproxen appears to be the only think thatreally reduces the pain, cocodamol i also take but think i should stop it, as it does little with pain but does help me sleep
I have taken several cupboard loads of pain killers in my time, not in one go i hasten to add!!, the secret , especially in a flare or similar is to take them regulary, up to daily maximum dose, not struggle without.
Thank you I have had 4 hours sleep and I could scream as the pain is moving all the time from one joint to the next it really gets me down and because of that i'm finding myself crying all the time, but I agree with you about taking them regulary, which I am doing but they are not helping,I have got my next appointment in June so I have a list as long as my arm to take with me.
Glad to hear you didn't take yours all in one go !.
your local pharmacist/ GP can review your painkillers with you before that appointment x
It's really hard to find the balance between pain levels and medication. So long as the side effects aren't too bad I think it must be best to take the pain killers even if they only give a little relief, because it helps you get on with life, and not be stopped totally by the pain. It's a really hard decision though when the pain killers don't seem to help at all. It does make you wonder if you should continue. I've recently increased my arcoxia but it hasn't made any difference. I'm not on maximum dose yet, and apparently with oa meds take a week to work! So my plan is to gradually increase the dose every couple of weeks if its still not working, then stop all together if I get to maximum and its still not working!! No point in taking meds that don't work surely? But I will check with the rheumatologist first, whether I should stop, because arcoxia is also an anti inflammatory. (Oh no I won't, I've been discharged by my rheumatologist-well that's helpful)
Hi yes I think until your RA drugs get the inflammation under control ,painkillers are the way to go. If you are still in pain then either you are not taking the maximum dose? Or the painkillers u have aren't effective enough. I find like Summer says a trip to the GP is best for pain control as you might have to try a few to see what units you, mine is morphine, slow release mst and ora morph as needed, I don't zonk out on theses and they do help the pain. But tramadol knocks mme out, so it's all individual! Good luck in June but its a long time till then so hope u get the painkillers sorted by then, or your RA drugs kick in xxxxxxx
I think if you need lots of painkillers every day then it means your r/a isn't under control and it would be time to have the rheumy look at changing your drugs. Are you on biologic drugs? When my pain has been really bad i usually get a steroid injection and i try to just take paracetamol. I was on 3-4 months of anti-inflammatorys before i got my drugs and they caused an ulcer so i now avoid them if i can. Last year i was so bad with pain everywhere but i am now on rituximab and that has really helped. Good luck x
Hi nellysgran I totally sympathise with you as I too live on painkillers. I took a week off work this week, the weather has been glorious in London UK but I have spent most of this week in bed doped up with tramadol & unable to move until they start to work. I took the week off work because I have suffered very badly this year and have had numerous occasions off work sick because of the pain. I only started the job in November & since January when I was made permanent I have had so much time off and have now had 3 months of less than half pay as I am not yet entitled to sick pay. I am only 52 & have had problems with my arthritis since my early 20's. Nothing has helped, steroid injections don't last & the tramadol is taking longer to work. What I wouldn't give to have my old life back but as this is in my family I have to learn to live with it. Good luck to you all, I wish you all a pain free week if that is possible. xx
I cannot have any painkillers cos of allergies. I have a regular massage, well I teach it anyway now, and also teach Tai chi that is the best heaven sent gift. I do not say give up any medication but also say, try and help yourself with whatever works for you. If it is crosswords, gardening or hula hoops go for it. But please don't sit still and do nothing and also don't take medication and cos of there being no pains, go and overdo it. We must all pace ourselves.
Thank you all for your kind advice. I am going to phone my rheumy nurse on Tuesday as today has been horrendous at one point I felt like my hip was broke just couldnt move for the pain, just got 2 more painkillers to take before I go to bed, as I was woken last night by lots of cars going through the village doing an overnight rally !! I live in the countryside in Wales !!
Wendy xx
Ongoing pain really shouldn't be part of rheumatic disease if its properly treated, unfortunately most of us spend rather too long getting to the right treatment. Its probably a case of becoming a bit of a stuck record with either rheumatologist or nurse and just keeping on giving them feedback about how bad your pain is and where it is, and constantly tinkering with doses and combinations of meds until they get it right for you. The only reason anyone should have ongoing pain would be if there has been permanent damage that is causing problems (not all permanent damage does cause pain though), but even then there are things like nerve blocks etc that can be done. I think we all put up with a bit too much pain sometimes when there are actually medical solutions that would reduce it considerably.
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