Do you regularly take stronger pain killers ? - NRAS

NRAS

32,509 members39,888 posts

Do you regularly take stronger pain killers ?

Marionfromhappydays profile image

Are pain killers a regular part of your daily life ?

Should it be expected to be taking co-codamol on a regular basis ?

I've been i need to take them and I dont want to! Am I being a prat ?

77 Replies

Good morning! I only take painkillers daily/regularly when my RA isn't under control... was on Tramadol (and a few others) from June to the beginning of October when my RA was out of control after stopping baricitinib. But if I needed to take painkillers daily, I'd wonder whether my biologic/DMARDs are still working enough (I'm on Celebrex now, which is a NSAID, no idea if this qualifies as a painkiller? Have to take it 2x/day). But I think during a flare it's normal, unfortunately 😣 I'm sorry you're in pain and have to take co-codamol 😢 I hope it's working at least? xx

Hey morning 👋

I won't take them as in my mind they are for when things get really bad, but my GP says I need to accept ive got a long term chronic condition and take them more regularly. I would have thought if my arthritis was under control I wouldn't need them.

I don’t know if I'm too stubborn for my own good 🤷‍♀️ This condition is pants isn't it x

I have to say I agree with you! I don't see why you would need to take strong painkillers regularly if your RA was under control. It might be different if (like me) you already have permanent damage - then you'd probably need to take painkillers more regularly as the damage is irreversible and RA meds can only prevent more damage 😟 Being stubborn is good I think - just don't take it as far as me 😏 What does your rheumy say to this?? xx

Sorry that your damage is permanent, hopefully now your on your new drug it will stopped progressing ? Hope so x

Rheumatology registrar said dont take them as addictive, I told GP this and she said to take them 🤔

I've got a letter from hospital Friday saying I've got a video appointment Monday so will ask then.

Oh that's excellent news re your appointment! I'd listen to the rheumy, GPs are fine but I always take my rheumy's advice over my GP's - he wanted to put me on 50mg Prednisone 😱 while my rheumy was reluctant to put me even on 15mg (from 10mg).

Yeah my rheumy hopes my mountain of meds is going to prevent more damage. I hope it'll save my left foot - my right one's pretty much hopeless 🙈😅

Good luck for tomorrow, I hope you'll get some got advice xx

50mg holey moley 😱Thats kinda scary .

Thank you , nearly fainted I got this appointment 🙌

My thoughts exactly 😂 50mg is crazy! Never been on more than 20mg ever xx

That is incredibly high and will probably knock your immune system for six. I would probably avoid the increase were it me...but we are all different and our RA affects us all in different ways. Take care.

Oh I haven't taken it - I always take my rheumy's advice over my GP's 😀 Just smiled politely and never picked up the prescription 😅

Well done, I think you are right in what you are doing. We have to use our common sense and do what we feel is right for us at a given time. Take care, Skincap...me not you. Forgive me for using it but it is the perfect nickname for me. It describes my scalp perfectly since I have lost two thirds of my hair to another auto-immune issue...sclerosing alopecia! Not what a lady wants, even an old one like me! I just couldn't resist it! I might end up wishing I hadn't written that, if my hubby gets to see it! There are worse things...and after almost ten years of it vanishing I have learned to live with it! We have to chuckle to stay sane, don't we! God Bless, Knip.

Good morning Knip ☀️ Oh you're definitely right - what else is there left but to laugh about it all 😅 I often make fun of my weight - after 10 years of trying to gain weight and look normal, I've just accepted it. xx

😮 Well I never! 😁 Good luck for that M. x

Good news about your appointment 🤞

I have not read all responses so sorry if repeating others. How we my rheumy is same as your gp. He says it's part of the treatment. I was and am like you regarding the thought that I shouldn't have to take the dihydrocodeine and paracetamol on top 9f all other meds. However I do. I suppose I've given in as they work to help control the pain. I'm presuming that's it for me. I wish you well.🌞

I’m lucky I haven’t needed them since my RA drug has been working well. But getting new twinges now and am wondering whether I may have more OA and may have to take painkillers again.

As you probably know Cocodamol is addictive so it’s best avoided if possible or try not to take it all day and every day. It can also cause other problems!

Of course you’re not a prat! Has your GP not offered you good pain relief? I suggest you ask for an appointment to discuss what’s available. Perhaps a referral to the pain clinic?

I’m really sorry you’re suffering MFHD and I know you’re dealing with a number of medical problems atm. I hope you can get help and relief soon. Xx

Well rheumatology said dont take them regularly as they are addictive but GP said it was ok to take when in pain but I hurt everyday 😁

I didnt know if I was being too stubborn. I've been sent a video appointment with rheumatology for tomorrow which I'm quite shocked about so will ask them again.

Thanks x

Thank goodness you have the appointment. Make it quite clear how much you’re suffering and that you have needed to take cocodamol regularly. So if they don’t like it they should offer an alternative strategy: either change your RA meds to something that works better or prescribe better pain relief. Let them see in the video how you’re struggling with the pain and its effects (disturbed sleep, fatigue etc) and don’t be afraid to cry.

If necessary ask for a F2F appointment so your joints can be properly examined.

As Mmrr would probably say, be polite but assertive!

Best of luck! 🤞🏻

Thank you x

I have ankylosing spondylitis rather than AS, and was diagnosed late with a lot of fusion and damage to my spine, ribs, feet and knees. So I have no chest expansion due to fusion, which puts all the surrounding muscles in spasm. Also both knees are subluxed as well as two toes due to shortening of tendons. So I have daily pain due to the damage already done, despite being on biologics which helps the stiffness and areas not already damaged.So I can’t take nsaids as I had a stroke at 52. So my gp put me on a pain patch, which on the whole makes my pains manageable. I do have tramadol but try just to take 1 dose a day when I’ve maybe been doing more and paying the price. I do take amitriptyline which helps with pains and to sleep better, which then helps me cope better on bad days.

Are you on a NSAID, as that may help your pains better than cocodamol. My patch is a godsend as it’s continually giving me a small dose, so I don’t get the peaks and troughs I used to get 🤗

So glad your pain patch gives you some help, whoever invented them is a star !

As far as I know i haven’t reached the stage of permanent damage yet but my rib pain and constant costochondritis is awful it make me feel sick when it really gets going.

I also get terrible gastritis and naproxen etc just really gets that going, ugh its never easy is it 🙄

Thanks for your reply x

Hi 👋 I take pregablin, paracetamol, I can't take codeine Makes me poorly..

I usually take naproxen which really helps, but can't when I'm on steroids. Hope your ok m xx

Thanks for your reply xI was chatting to GP about private referral and she mentioned pain relief, she thinks I'm being a bit too stubborn but I don't want to get dependent on them.

I wish I could take naproxen it totally wrecks my guts after a few days *shakes fist at my tummy* 😁

I also have bad tummy, but I make sure I take my lansoprazole twice a day, but I no what you mean as when it sets your tummy off it can last weeks, and it never ends.. I hope your video chat goes well tmrw, will be thinking of you x

Knip profile image
Knip in reply to jojoishere

I can't take it or any of the other stomach protectors I have tried but my new RA consultant suggested that I try lemon. I buy a low sugar, high (50%) juice, lemon and lime squash which I dilute with a little cold and then hot water from the kettle. I sip this as needed. It has been a life changer. My consumption of Gaviscon has plummeted. It could be worth a try. We are all different so it may not work for everyone.🙂

Morning Marion…. I used to take Co-codamol but it was really ‘trippy’ when I stopped… even a week on a week off. Really good for knocking me out though, which sometimes I really needed.. I was on Diclofenac & Naproxen for years… yet feel loads better now I don’t take them! I stopped as I was worried about my insides rotting away..

I now take Paracetamol if I’m really bad; and always just go to bed/ sofa. I now take Amitriptyline every night (20mg @ 7pm) which really helps me with sleep & presumably takes the edge off pain (it does seem to be a cure-all). I have Fibro as well as RA.

I always keep warm, and do take my meds regularly morning and night (7pm), and am strict about Central Heating and not over doing things.

I am on Mx 25mg & Sulfasalazine 1000mg twice a day.

Missing my Sulf (on rare occasion) makes me in pain & creaky almost straight away.

I would have a good chat with your Rheumatologist. I stopped taking co-codamol because it was just ‘too much’. I felt like I was ‘on drugs’ which obviously I was….!

Yeah I'm with you on the "what are they doing to my insides " naproxen makes my stomach hurt, its a bad boy for me !

I've only ever taken co-codamol in the night and it makes me fall asleep,which is great but I cant imagine taking it in the day.

Glad you feel better without them, sometimes you have got to weigh up pros and cons.

Will chat to rheumatology tomorrow and go with what they say, my GP is lovely but I'm only 47 don't want to be on pain killers for years (if I'm lucky).

Yep… I was diagnosed at 41, hence the stopping of all of them 5-6 years later.

I tried to stop taking the co codamol and instead tried neurofen & over the counter and after each try on day 4 I was in agony. So I now try to only take one in morning and one at night and then I cope with this (still have pain) then only take third one if off the charts. I have tried different ways one in morning and over the counter rest of day but none seem to work for me like co codamol.I assume if I am not flaring (never the case in 3 years) I might be able to change then! But I am sure fibro will have a different view on the RA view and then start the vicious circle again.

Was on Meloxicam but wrecked my gastric system. Frightened me so much, am not taking anything at the moment, but the end result of that is I can barely walk. Rheumy thinks I need painkillers daily for damage already done. Have F2F with GP on Wednesday for steroid shot that I have requested, so am going to ask about painkillers then. I find that Co-codamol has no effect. Rheumy said can take Meloxicam again in 3 day bursts every fortnight, but what do I do in between. So, in short I think I would take painkillers that worked if it meant more mobility and less excruciating pain. Am past caring now. Sorry for the moan. xx

No please do get it out, its horrible how it affects our everyday lives. Sorry you are in constant pain, it really needs addressing.

Doesn't seem a good theory of only a few days of pain relief then rest without, hope your app6goes well on Wednesday

Thank you. Warriors really is a good description for us as well seem to be in a constant fight to get properly heard and the right treatment. My rheumy is lovely and does his best but 3 monthly intervals waiting to see if the next drug works is very wearing. Sometimes, I feel envious of people who seem to have cracked it and can do all the things I can't any more. Part of it is probably the fact that on some days I find it difficult to accept the disease too. Hope you eventually get good control and don't need painkillers. You are young and the disease needs sorting. xxx

I'm the same too with being envious and I feel left behind a bit.

We got to keep on keeping on I suppose 💪

CripLady profile image
CripLady in reply to Wobbies

Hi… it took 2 years for my meds to kick in properly. Couldn’t really move during that time and screamed if I tried to… it felt like someone was ripping my arms out of my sockets…. Keep on keeping on xx

A friend I made a year into that time said I looked like a robot…

Wobbies profile image
Wobbies in reply to CripLady

Thank you for giving me hope. Every med I try works for a couple of months and then I am back to the screaming pain. So, hopefully the next one will be it. xx

CripLady profile image
CripLady in reply to Wobbies

I’d get some counselling too. It’s major stuff x

Knip profile image
Knip in reply to Wobbies

Meloxicam was brilliant for me but gave me severe chest pain, even on a very low dose, so it's a definite no no where I'm concerned.

I find I’m taking them more at night only as I wake in pain so many times. It seems to help but I would rather not. Aldo take them if bad and need to work but I really have to be bad as I can’t take nsaids.

I take them regularly, severe erosive RA permanent damage in my hands, wrists and feet with OA now lying over it..so a lot of pain at times! . I can't take Naproxen and I don't take daily steroids. My Rheumatologist knows this and was the one who prescribed it, if I'm in more pain I take more (never more than the recommended dose) if I'm in less pain I take less 🤷🏻‍♀️ It's now a way of life for me and I see it no different to taking steroids etc for a chronic condition but I always mention it at appointments when they ask what pain medication I'm taking. Like you said best to check with your medical team as everyone is different

Like you I feel I shouldn’t be needing daily painkillers, but unfortunately I often do.

Less than 2 years ago I could go several weeks without the need for painkillers but now I take co-codamol 30/500 most days. I try to take as little as possible but the last few months have needed pretty much maximum everyday even though I’m told my RA has improved 🤷🏻‍♀️.

My rheumatologist has flip flopped on several occasions about painkillers as GP was at one stage providing Oramorph or Oxycodone for flares which I wasn’t happy with. The Rheumatologist insisted I shouldn’t be needing that level of painkillers and said I should take steroids when flaring instead, this frustrated me as the GP prescribed them as the Rheumatologist said no steroids!

I am currently flaring (possibly due to also battling a UTI) and have been on steroids for the last 3 weeks and am still needing the co-codamol 3 times a day. This is unusual for me as the steroids usually help within 24-48 hours.

Our cases sound very similar as costochondritis was my first symptom and still is the one I find the most debilitating when I flare as it even affects my breathing. I have some mild osteoarthritis to the knees and lower spine but otherwise no bone erosions etc therefore I am considered in the “early stages” of RA.

My rheumatologist insists I shouldn’t be in this level of pain despite my scan showing “active inflammatory arthropathy” in my feet, ankles, knees, shoulders, fingers and wrists even though I am on a biologic 🤦🏻‍♀️

Oh Karen it's horrible having a flare, although it sounds like you've never really been out of flare if you know what I mean.

Yeah I dread costochondritis, when you can feel it starting to kick off and I just think to myself please just be a quick episode.

Hope the steroids kick in soon, you take care x

Morning Marion! You are a smart lady who can weigh the pros and cons of all the information the doctors are giving you. Doctors should be giving us their knowledge and guidance. They should not demand in my opinion. Ultimately what we take should be our decision, and our responsibility. I had a doctor last year tell me "well, if you don't do what I tell you, don't come back and complain about the pain". At first, I was offended. But on reflection he was right (even though he was a dick in the way he presented it). Get the information from your doctors and be confident in your decision.

He sounds a bit of a dick 😅

Thanks xx

I'm prescribed cocodamol Liz. I take them regularly, 2 x 4 times a day. I was told they wouldn't work so well for me only taking them when I have pain (!) I'm also on prednisolone which has just been increased. The NSAID I take is etoricoxib. Each of my other regular pain relief are for OA… Butrans/Butec transdermal patch, pregabalin (for neurological pain) & amitriptyline for muscular pain.

nb I omitted Oramorph for breakthrough pain, though I've had my chemists dispose of a fewvout of date bottles as I don't find it helps particularly well, but it might do one day, so it's a bit of a crutch med.

I only ever take the odd paracetamol and consider myself fortunate that the RA meds work well so no need. But its a strange disease that is systemic so that for me there no need for pain relief but I have to take Riveroxaban is its done my blood in. "Sticky blood " how yucky is that. ! So I don't get the pain but a life threatening risk of clots and indeed I did have Pulmonary Embolisms and of course that is a sobering realisation of how fragile life can be. PS just as well really as not allowed NSAIDS with kidney damage so I don't know what happens if it ever does go out of control but I stay positive and don't worry about something I can't change.

I have tried many painkillers but because of stomache, dizziness,nausea ,eyes tighten, skin allergies have to stop. Only take paracetamol .Living with constant pain make you very vulnerable. I have to take steroids injections on and off. Sometimes they help sometimes not .I have never been offered for pain management clinic. I even cannot take vitamins daily .

I don't take regular pain relief. I am at the moment as recovering from pelvic fractures but only naproxen. Had RA 23 years. Even after my hip replacement I was only given one codine and paracetamol. Its caused a flare at that moment but hopefully will settle down soon. Many of us don't take any pain relief when under control. Pain means meds not working and damage is being done x

You are one of the "lucky" ones. Pain does not always mean Meds are not working, when you have irreversible damage caused by waiting for RA meds to work and that you could tolerate, with then the added bonus of OA, which can and is incredibly painful and no meds for that other than pain relief?!. I will not ever mention what pain relief I'm on for fear of being judged and being told I don't need it, but sadly it's fact for some of us.

Certainly Nyree is fortunate but agree it's not always the case, especially as you mention when the pain of OA is also being contended with. Often RD comes with another condition but I’m commenting on OA as this is my particular double whammy. I do have some residual RD pain in my feet, in spite of being diagnosed promptly sadly the erosions don't repair themselves. If someone is unfortunate enough to also have OA as painful as it can be there aren't ‘specialist' meds to treat it & like you I rely on quite substantial pain relief in an effort to keep pain at bay, mostly in my hands but also neck & lower spine. I have disclosed my pain relief & not been judged as yet but do understand why you wouldn't wish to have yours discussed potentially. That said it's not for us to judge anyone, we don't & can't ever know the full story, only that which is offered & the member is comfortable sharing with the group.

I'm confident all mine work, excepting for breakthrough pain which I accept as the norm. Thankfully my breakthrough pain is usually limited to my hands nowadays hardly surprising considering. Unfortunately though overprescribing in general is an issue & I think it's worth bringing this up on this post, not that I’m suggesting this applies to you just to be clear. At each of my annual med reviews each is discussed in turn & there hasn't been one removed, ever, in spite of the reviewer sometimes commenting initially that I am on a lot of meds. I'm asked of each one why I take it, how often, the dose & what I know of that particular med. It has been commented on that they are pleased I’m aware of what I take but that it's not always the way which I find disconcerting, don't know about you 3LB?

Hi NMH, oh I'm certainly not implying anyone on here is judging, what I should have said is that I wouldn't disclose it to colleagues, friends or even some family for fear of being judged about pain meds. Until you have experienced the excruciating bone knawing pain of rampant RA and OA it's hard to understand. I once told my old Rheumatologist about this pain and what did he do ..prescribed Tramadol rather than looking into further why I was experiencing this amount of pain..but that is another story!

They are aware of my pain meds and is questioned at every review and NOONE has ever said to stop..am I reliant in them? Yes probably I am..but never take more than the prescribed dose and less some days if I am "ok" but even having had to wait over 18 months for Rituximab I've still not taken extra and have to learnt what the pain is but sadly it is irreversible.

No way, would I ever imply anyone on here was judging me..BUT sometimes taking regular pain medication is not always down to our meds not working. Meds not working for me would mean that I get extra damage to what I have already....having erosive sero-positive RA.

I am in the camp of if you need pain meds then take them if you don't, then don''t but it's not always as simple as this! , I do feel more needs to be done on the highly addictive quality of some of these pain meds but that's a different discussion I feel. But having a long term chronic health condition brings up other issues along the way. We're adults at the end of the day and as long as our doctors are aware and ok with what we take then so be it.

I misunderstood you to mean you'd not even mention them here, thanks for clarifying. I hope nobody would ever judge someone here, as say I haven’t been so no, I wasn't implying you have been, it's not our place to judge. I would hope people would be kind & understanding, not judgemental. As the old adage goes, walk a mile in my shoes…You saying about tramadol, my previous GP knew from another conversation I’m not a fan of tramadol so when we were discussing controlling my OA pain she'd drawn up a list of alternatives for each need. I miss her, she was an excellent GP. The reason for pain should be investigated, by not discussing or examining & simply prescribing tramadol suggests it's a cure all & shouldn't be treated as if it is in my mind. The same with any of the strong pain relievers, they should be prescribed according to where the pain originates from.

Exactly it should be, I was very naive to this condition back in 2014, but only after having a change of Consultant was my RF tested again and came back very very high that I was put on the big gun RA medication, but sadly the damage has already been done, in hands, wrists and feet. A good Consultant or GP are worth their weight for sure.

Sadly friends and family don't always get it with the pain medication and why would they..that's why I don't mention it especially with people who don't know me, but just to reiterate again , I comment very rarely now but have never judged or felt judged on here.

I also have OA and had a hip replacement in March. I also have osteoporosis and recovering from 2 fractures in my pelvis. I'm one of the lucky ones who have extremely high pain threshold, only took Naproxen for all. Only had paracetamol and 1 codine after surgery.y CRP at the moment is 136 due to massive flare when I fractured pelvis. It's how I am.

I take codeine 2tablets 3 times a day and naproxen twice a day. I am still waiting for Humeria to work, it is getting there but still in a flare for months! I will see the Ra consultant next month. About another 3 weeks away. When I have my good days I only take 2 codeine once a day. I take lefluomid and hdyro. It has been a long time getting the Ra under control this time. Take care.

Hope it starts working soon x

I had to think about my answer for several hours before writing.I was initially going to say no, I don't take strong painkillers regularly, then thought the better of it.

I preface my answer with I have pain most days, pain that 'ordinary' people do not have, the pain isn't unbearable, but I suspect that I have kinda got used to it and my pain tolerance has increased over the years. I hardly notice the jab of the needle going in for my monthly blood tests, I regularly bump and bang myself, more often than not have bruises on my body but don't feel much pain when I do bump myself.

Today, my partner asked me if I was in pain as I walking oldly, when I thought about it, I was in pain, when raised into my consciousness my lower back was actually aching quite badly. But until asked, I wasn't consciously aware of it.

I swallow toficitinib, leflunomide, 100mgs diclofenac acid, 6 mgs prednisolone and around 2000 - 3000 mgs paracetamol every day. All of the meds act to reduce pain in some way or another. I also find taking a couple of paracetamol, using an ice pack and lying down for half an hour reduces my back /leg pain a fair bit.

So I think I have to answer yes, although I don't take what some people might regard as strong painkillers, I couldn't manage without the diclofenac acid/paracetamol and ice packs.

I regularly take 15mg codeine in the evenings to help me sleep & 250mg Naproxen in the mornings.

In short yes, I take cocodamol and ibuprofen all day every day. I have been told that the pain I feel is not RA in play, but the permanent damage caused by the RA when it was not under control. The doc has told me if I have surgery that pain will ease off. I think every case is different, but I totally get the view that strong pain relief should be the exception rather than the rule.

Hi Marion,If you need to take pain meds, and if they are to deal with RA pain it would suggest that your RA is not controlled and maybe you need a different treatment.

Go gently

I live on a diet of co codamol . I take the maximum dose and I function can top it up with extra codeine if needed but very rarely also diazepam if back is in spasm . It’s been like this for so many years . When I was on Humeria I managed to come off super strong opiates and gabapentine etc . Now I’m not on it I just swallow the pain killers and get on with it . I’m totally sure after this many years I have a codeine addiction . It’s so hard to juggle but I won’t take anything stronger again if I can help it . Wish you well x

I was diagnosed 6 years ago and I’ve been on NSAIDS ever since. I take 1600mg Brufen Retard and paracetamol if extra is needed. I hate it. I can’t take cocodamol as it makes me very constipated. I’m on 15 mg MXT and I do have steroid injections in various places every few months.I’ve never been able to stop the painkillers. They make my life bearable. Unfortunately I can’t take biologics as I had a melanoma 2 years ago and If I make it, I can start taking them again after 5 years. 😌

I certainly wouldn't take them on a regular basis if I didn't need them. They are not a preventative medicine, just a painkiller, so not necessary if no pain. On the other hand, if you are in pain constantly then yes you will need to take them but it is not a great idea unless you absolutely need them. If you are in constant pain your RA is not under control and your rheumy needs to be addressing this.

Morning Marion, I as you know don’t like taking any drugs but alas we need them from time to time. I can’t take any anti inflammatory ie ibuprofen etc, for other reasons. so it’s just paracetamol for me but if I have a severe flare as I have in the past I would use co-codamol but only first thing in the morning to get started, there after I’d stick with the odd paracetamol or two..

I have even resorted to taking oramorph when the pain is bad. xxxx

I've been taking co-codamol 30/500 for many many years now but no more than 3 daily (take paracetamol/ibuprofen to top up). I have pain daily from dystonia and migraine as well as RA and couldn't function without them. I know that they can be addictive but have not increased the dose at all over all these years. Everyone is different though and if there is a better alternative then that should be explored. Unfortunately in the past I've become very ill with infections (pneumonia, joint, sepsis) due to some of the drugs used to treat RA so can only tolerate Sulphasalazine and Prednisolone. I do hope that you find a way to cope with the pain and not have to worry about the risk of addiction/side effects. Take care. xx

Unfortunately pain killers are part of my everyday life at the moment. Not because of my inflammatory arthritis but because I have osteoporosis and a sacral insufficiency fracture although I remember being told by a rheumatologist a couple of years that I could top up my daily 200mg hydroxychloroquine with paracetamol or ibuprofen as and when I needed it.

I’ve tried all sorts of meds for pain relief this last couple of years since breaking my wrist. I started on pregabalin (Lyrica) for the CRPS that I developed as my plaster came off - that was like a total out of body experience even though I was just taking what my then GP described as a ‘starter’ dose I stopped that. Shortly after that a hand physio I was having online consultations with suggested I try gabapentin - disaster again.

Fast forward to June this year when I was in agony with this sacral fracture, eventually a GP in our local A&E prescribed 750mg naproxen per day but only for five days, that worked a treat.

After I had three private MRI scans and the fracture (I told them all that I felt as if my sacrum had been split in two - but nope, the doctor wasn’t interested and the first physio I saw said it was referred pain from my lumbar spine - grrrr) anyway, that and other messy stuff was discovered my physio wrote to my new GP - I parted company with my previous surgery due to lack of care / interest and following a conversation where I said I couldn’t take the GABA drugs she prescribed 1000mg naproxen along with omeprazole as she put it a ‘tummy protector’. After a couple of weeks on that I had the worst diarrhoea I have ever experienced,

So I stopped the naproxen, the GP said to take paracetamol or codeine and to keep taking the omeprazole - actually she said to double it!- but the diarrhoea and gut pain continued so I stopped that too and life went back to normal alas so did the pain.

I then bought a pill cutter and chopped up my large dose naproxen tablets until I was once again taking what the hospital doctor prescribed which was ok but when I read the PIL I felt very uncomfortable taking naproxen in the long term.

So I started taking paracetamol - six to eight every day. I have since invested in a PEMF mat that I lie on for 20 minutes twice a day and not only do I sleep like a log these days but I’ve cut my painkillers down to one capsule three times a day.

Obviously I’d prefer not to take painkillers at all but unfortunately I don’t think that’s going to happen for a while.

So bottom line - I don’t blame you for not wanting to take painkillers and as soon as I can stop I’ll be joining you on that. 😉

Youve definitely been through it, im not surprised you need painkillers!

So many of them upset our tummy, it takes 1 thing away but gives another !

Hi M. My ‘regular’ daily intake is Naproxen morning and evening, 25mg Amitriptyline after tea and 2 Paracetamol morning and afternoon. I’ve tried coming off the Naproxen several times but it seems to be the only thing which deals with the ‘toothache’ pain in my left knee and left foot (suspect this may be permanent damage). Tried Etoricoxib but didn’t do anything for this pain. I do take Lansaprasole daily to try to protect my tummy. I’m thinking about trying without the Amitriptyline but have noticed on the odd occasion that I forget to take it that I sleep much less well and am awakened by aches and pains several times during the night.

I do have a stock of codeine, prescribed by my Gp but don’t like taking it so keep it for emergencies only. I don’t like the way it makes me feel spaced out (wouldn’t trust myself to drive on it) nor the constipation. I am also wary of its addictive nature - when I mentioned this to my GP, her advice was that I wouldn’t get addicted to it as I was using it for pain relief rather than for the ‘high’ feeling - I’m not sure if this statement is scientifically sound though!

Whenever I have discussed pain relief with Rheumy team, they are generally not that interested and say that is not their responsibility, it’s the GPs! However they advise that you should always start with taking regular Paracetamol at the max daily dose to see if that works first, before adding other things to it in an incremental approach?

Hope your appointment goes well today xx

Thanks for your reply.

I seem to get conflicting advice from GP and rheumies.

GP said to try amitriptyline for bed time but I don't want to get dependent on tablets plus I need to be up early to take kids to school. I'm beginning to think I have to change my mindset about drugs etc. I feel shite all the time! Need some sleep.

You take care x

It’s tricky isn’t it? I think not sleeping well has a massive impact on how we feel generally though. I was told the amitriptyline isn’t addictive and wouldn’t cause any issues with withdrawal etc, and I am up most mornings at 6am so doesn’t seem to effect me like that. May be one to consider before codeine?

I started to take codeine 12 months ago, so many problems it was changed to morphine patches, one week later I was still constantly sick. The dose was reduced but it made no difference, so stopped. Next came Cocodamol, this worked quite well for about 4 months with constant nausea, stomach aches and dizziness. The bad bit was the extreme constipation. This gradually stopped having much effect. Next came Tramadol. This seemed to be working well until about a month ago when I started to realise that it was getting less and less effective and too many side effects to list.About 10 days ago went back to CoCodamol which to my surprise was effective again. I’m starting to think with me In future I shall after keep changing back from one to the other. I’m also back on MTX which I think is also causing me side effect problems. But I’m in such a state with pain, mainly evening and night I’m trying to ignore the side effects. Not been to bed now in a night time normal manner for about 3 months owing to severe insomnia, probably caused by Bisoprolol. Have now stopped Candesartan owing to it being the likely cause of constant rashes.

Xx

I used to take cocodamol regularly. Now i wont touch them. I started to get very depressed and angry which isnt me at all, blood work started to show liver changes so i made the decision to stop taking them. Best thing i ever did because i got me back. What i thought was down to the RA was actually those awful tablets changing my personality. I only take nurofen now as and when i need it. Also cbd when i can afford it.😊

I take co codamol as I have joint damage from years of uncontrolled rd. However, I take them when I really need to and not when I can avoid it. I don't think its healthy to take them all the time. Plus I'm worried about them stopping working. I don't like the side effects of stronger pain killers.

Yes seem to need paracetamol daily or when pain is unbearable co-codamol. I exressed this at my last f2f with the RA nurse last Monday. Said I didn't want to be on this every day rest of my life.

Hence they came up with trying to add Sulfasalzine to MTX to control my flares , pain genral mayhem that happened this year.

No you're not being a prat :)

I'm currently trying to get my RA under control although, from past experience with RA flares, I know I will get there. At present I try to limit co-codamol use to bed time with a further dose around 5am. That helps me because I wake up in a great deal of pain and stiffness in the early morning. I stick to paracetamol during the day for the most part taking it as little as I have to. I waited for ten years in the eighties for my first hip replacement, because of my age...I was 34 when it all started and 44 when I had it done. Things are different now and we have dedicated RA Departments. Because I had used so much codeine based medication it didn't help at all post surgery. I have only used during bad flares, as now. I shall come off it again as soon as I can. I'd be further on but had to lower my Mtx dose for a bit due other issues. I can't take any NSAIDS now, which used to help. 🙂

I take two 30/500mg tabs in the morning at the minute. When I'm sore. That's usually all I need for the day. It's crap having this condition but there is no point in being in pain as well. I know a lot of people who prefer not to take pain relief but if you have a broken leg you don't go it's ok I don't want it fixed so why not take tablets if they work.

There is a lot of concern about addiction but I can stop them, and do, when I'm having a good spell.

In general the whole thing is crap but we just need to aim for the best life we can.

Morning,

I can relate to this so much.

I hate taking any medication, I just get a little but of anxiety surrounding all the strong medication before being diagnosed and getting so much pain I'd only ever take paractmol.

I only take my naproxen when the pain is really bad. I generally try and get on day to day with the stiffness and pain without taking anything( my own worst enemy I think at times 😂) its only when it becomes unbearable although I do sometimes ask myself when the naproxen is only dulling the ache if I had not caught the pain in time and if I did take them daily would it keep it at bay instead of waiting till its at a point I could cry.

I do now wonder though if the stiffness in a morning and achy heavy throb pain in my back and hips could be the damage already done with my AS being at stage 3.

I do take naproxen as I found I could not function as well on co-codomol but I do find if I've not caught it in time it only dulls the pain not fully takes it away.

I dont know what to say I don't think you are a prat and would never judge anyone for feeling this way as I think its so hard. This illness makes things very hard at times. I do think talking on here and asking does make me feel abit better.

What pain relief do you take?? X

You may also like...