Hello

Boomer13

Thanks for asking, I'm doing well right now (well, it's only 1 week) and to celebrate (and test the addiction to codeine-paracetemol theory) I abruptly stopped taking them. I am happy to say that after taking 4-6+ of these a day for the past 2+ years and therefore being a candidate for an addiction issue, I abruptly dropped to 1 in 24 hrs and then none over the past couple of days. In my case I take other pain meds too (Tramadol, etc) but I wanted to let you know I've absolutely no effects from coming off them except a little more pain.

Anna

[Deleted User]

Please do seek advice from your GP/ Pharmacist or other medically qualified person familiar with your condition and treatment before reducing or stopping prescribed medication

Moderator

Boomer13

Thanks Moderator, I can see now that my well-meaning post was inappropriate as I had received permission to reduce my meds from my GP. It was the wrong thing to post this.

Sincere apologies,
Anna

Toots

Boomer13 wrote:

Thanks Moderator, I can see now that my well-meaning post was inappropriate as I had received permission to reduce my meds from my GP. It was the wrong thing to post this.

Sincere apologies,
Anna

I totally understand why the moderator post and of course, very sensible.

That said, I don't think it was wrong to post it given your intention, which I totally got. Obviously you had permission from your doc so that was fine, the main issue relevant to me was that you had no dependency issues. You're not the first person to say this to me recently actually. It's just that whacking great caution on the box, and of course recent news articles. Mind you, I'm already addicted to nicotine haha, which is probably way worse! Thank you Anna, I appreciate you sharing. I know everyone is different, but this may give me a little peace of mind that perhaps it's the last thing I should be worrying about right now. There are worse things, right?! Glad you're feeling well right now! x

dreamdaisy

Dependancy? I think that maybe 'neat' codeine is more likely to be the culprit but we're all different in what we can tolerate etc etc etc. My late father-in-law was a great one for not taking pain relief because of the addicition risk, and in so doing made not only his life a misery but those of those around him; way to go Cyril.

I keep my pain relief to the minimum through choice: the pain ain't gonna go away and that leaves me the option for the stronger stuff when things go mammaries upwards (which does happen). You are still in the very early days of this malarkey, and if constipation is an issue well that is easily sorted via figs, prunes or (in my case) docusate capsules from my GP. Do you have to pay for your prescriptions? If so it may be worth researching the prepayment certificate, it's available in either three or twelve-monthly versions and can save one a huge amount of money. DD

Boomer13

DD is right on there. I went for several years not taking any much for pain while I had 'just' a single joint affected. The pain was excruciating, I was not a hero, and the experience did not make me able to take the pain any more easily. It just turned me into a cranky monster, torturing family with my short fuse and inability to find anything humorous or fun. Now I take all I need to be as comfortable as possible and they don't seem to do much sometimes. Chronic pain has many unfortunate effects including becoming a grumpy in-law-Cyril! My poor spouse!!

Thank you toots, it is rather nice to be able to reduce meds a little, even though I know it will be short-lived. Nice to know it is still possible. Hopefully, your medical situation will go well and you will not have to take pain relievers endlessly, like some us do. It's definitely worth it though, for quality of life in the present.

Fingers crossed for you.
Anna

Toots

dreamdaisy wrote:

Dependancy? I think that maybe 'neat' codeine is more likely to be the culprit but we're all different in what we can tolerate etc etc etc. My late father-in-law was a great one for not taking pain relief because of the addicition risk, and in so doing made not only his life a misery but those of those around him; way to go Cyril.

I keep my pain relief to the minimum through choice: the pain ain't gonna go away and that leaves me the option for the stronger stuff when things go mammaries upwards (which does happen). You are still in the very early days of this malarkey, and if constipation is an issue well that is easily sorted via figs, prunes or (in my case) docusate capsules from my GP. Do you have to pay for your prescriptions? If so it may be worth researching the prepayment certificate, it's available in either three or twelve-monthly versions and can save one a huge amount of money. DD

Thanks DD x
Re dependency, perhaps the warning on the box is a cover-all, simply because it contains codeine and the newspaper article (Daily Mail I think) was particular to over the counter and 30/500's. Anyhow, I've pretty much decided to stop worrying about it and take them as I need to. I don't need to turn into a Cyril too!

Happily, I'm in Scotland, so prescriptions are entirely free, that's at least one thing I don't have to worry about.

Boomer13 wrote:

It just turned me into a cranky monster, torturing family with my short fuse and inability to find anything humorous or fun.

Yeah, I don't need to be adding that to my list lol, point very well taken.

Boomer13 wrote:

Hopefully, your medical situation will go well and you will not have to take pain relievers endlessly, like some us do.
Fingers crossed for you.

Thank you so much Anna. After having had a very painful weekend, I seem to be much easier today. I took a hobble over to the shop and back and although my ankles are twingy, nothing like they were, so I'm happy enough today! x

Boomer13

Well that is certainly good news !

Hopefully it lasts for you,

Anna

salamander

hi Toots, I've welcomed you on another thread.

I've got sero negative inflammatory arthritis,now called RA by my rheumy.
It is difficult to get a diagnosis but my bloods were elevated for inflammation, not desperately high but the time I got to my first appointment I couldn't walk and was in excruciating pain. I didn't sleep for the last 3 weeks before it. When my own GP came back from a sabbatical she got the wait for the appt reduced by some 8 weeks. I had been sent an appointment for early onset arthritis, not acute. I understand your frustration and would suggest you ask your gp to contact the hospital.

As to pain killers, they wouldn't allow me to take much because I had high liver results but once I was diagnosed that changed. I didn't become addicted to anything. I do believe if you take only the prescribed dose it lessens the risk. Like some of the others here, I take far less pain killers these days. That's got quite a bit to do with the drugs which modify the disease. In the early stages it is best to take what is prescribed.

Something else you asked about was something along the lines of how do they know it's inflammatory rather than osteoarthritis. Blood results, scans and a check of all your joints, along with how you describe things, i.e. do you have morning stiffness in your legs for more than 1/2 hour, etc. will tell them an awful lot.

I hope you haven't got RA but wish you luck with getting your appointment forward a bit.

Toots

Thanks for the welcome Salamander. Everyone has been so friendly

Thank you too for the information, I'm accumulating it, just hoping my brain can hold it all!

Got a letter from the hospital today confirming my referral and that I should hear from them within 12 weeks blah blah. I'll give them a call and see if they work a cancellation appointment system. While I sincerely hope it's not RA, at this point I just want to know what the problem is and most of all how to 'fix' it lol. As ridiculous as it may sound, I cried when I found I didn't have RF marker - how shocking is that? I guess I was hoping that it was positive so that things would move faster. Terrible thing to admit, but it's the truth. Although it seems like it doesn't take much to reduce me to tears over the last while!

I hope you're having a good day x

stickywicket

When we're in a lot of pain, Toots, our tolerance levels for anything are very low. (Just ask Mr SW ) Don't beat yourself up for being human.

As for being 'ridiculous', when I got my diagnosis I felt nothing but triumph as my Mum & Dad had thought I was being a wimp over 'chilblains :roll:

I certainly wouldn't put too much store on 'being fixed' though. If you have an auto-immune variety the meds will help to damp it down but, alas, arthritis is a friend for life

hileena111

Its very understandable.....I think we would all rather have a result {regardless what it is} than the awful not knowing....Once you know then you can figure out how to deal with it

Love
Hileena

Boomer13

Hi toots,

That's very understandable. I always assumed I'd be relieved by negative test results but when they come back negative, it's even more stressful. I lived for years not knowing what I had, other than it was some kind of rheumatic disease. I'm some kind of champion in the negative test result department. It's made a huge difference to me, and my levels of anxiety, being able to finally put a name to the illness and I don't worry about the tests now. Doctors read them in the context of your signs and symptoms anyway, so they only contribute partly to your diagnosis.

The not-knowing is dreadful and you must develop a coping strategy as stress can cause flares of your joint pain, so you must not let it get to you. You've got part of this covered now you've found the forum . Of course, you having a therapeutic cat will help too. Mine sure does

I hope you get answers quickly.

xxAnna

Toots

Thank you everyone for being so understanding. I'm pretty sure my reaction wasn't understood by folks around me and compared to a lot of you I've only had to wonder for a short space of time. Good to know I can be completely honest here and not be condemned for it lol!

I'm particularly sore today after having had a couple of really good days. Mum blames the tomatoes I ate yesterday! Yeah, no doubt she's spending far too much time with google, I think she figures if I cut out tomatoes and cigarettes, I'll be right as rain lol! I know the food-related issues remain unproven, do any of you have specific foods that you know set you off? Or is this pretty much a myth?

dreamdaisy

The food issue can be relevant for some - I find that acidic foods make my OA worse but what the hell? I'm used to pain so an increase is OK if it's as a result of my actions; I reckon that my lifespan is far too short not to indulge in the odd pickled onion every now and again. When I was a child I was plagued by chronic eczema and had to live on a very restricted diet - I can't be bothered with that now, the meds for my PsA mean that I can now indulge in all the verboten goodies without any trouble. DD

Boomer13

I don't know about the tomatoes toots, but the tobacco cigs are very bad news for us autoimmune types . You'd really be doing yourself a favor giving those a toss.

Sorry, had to state the obvious, didn't I........

xxAnna

Toots

dreamdaisy wrote:

, the meds for my PsA mean that I can now indulge in all the verboten goodies without any trouble. DD

Who'd have thought there would be an up-side?

Boomer13 wrote:

I don't know about the tomatoes toots, but the tobacco cigs are very bad news for us autoimmune types . You'd really be doing yourself a favor giving those a toss.

Sorry, had to state the obvious, didn't I........

xxAnna

Lol, nothing wrong in being straight-forward Anna, I'm not averse to plain speaking, and you're absolutely right. It's something I've been thinking about for some time, just need to pull my socks up and do it, particularly now. It's so much easier to keep smoking than make the effort, you know? Keep telling myself that if it is RA, then I absolutely have to do it and better to do it now. And I keep telling myself that I'm miserable enough as it is right now, I don't need my smokes taken away. And I keep telling myself that maybe it's not RA and then it would be ok, right? Yeah, I am totally aware of my self-delusion, but perhaps it's time to stop messing about huh? x

Amy86

Hi Toots!

I'm also fairly new to the forum and wanted to tell you about my experience, as it sounds very similar to yours. I have recently been diagnosed with RA after around 8 months of going back and forward to the doctor. Like yourself, my rh factor was always only very slightly high so I was diagnosed with fibromyalgia and given anti depressants. I was also sent to a physio who then diagnosed me as hyper mobile and told me that this was the source of my pain and swelling and the treatment he prescribed was telling me to join a gym! Determined not to go back to the physio and tell him that I hadn't done what I was asked, I started taking long walks and it left me in agony.

I then went back to the doctors in tears when the pain and swelling was keeping me awake during the night and I was struggling to cope at work. He referred me to the rheumatologist but told me I'd be waiting a while to see them. Luckily, I have private healthcare through work so was referred to the rheumatologist and seen them within a week. It may sound silly now but I was so relieved when he said it was RA and I could finally start treatment. He could see how much the past 8 months had got me down and was horrified that I was simply told to 'join a gym!'

So, I suppose the moral of the story is to keep your chin up and I'm sure you'll find some kind of relief soon! I have my fingers crossed for you and hope this doesn't drag on too long for you. Just think, this will all soon be a memory and you'll be sharing your advice on here!

All the best x

Toots

Aww bless you Amy, thank you so much for sharing! I can't believe how differently everyone here has been treated by the medical authorities, it beggars belief for someone to tell you hey, just join a gym! Jeez I have enough hassle getting around the house let alone anything else!

I hope you're now getting some treatment after your long wait? And no, it doesn't sound silly saying you were relieved when you were diagnosed, that's how I feel too. Hurrah for private healthcare lol, I'm jealous of you!

mig

Hi Toots, apologies I have just realised I haven't welcomed you to the forum after you replied to my post ,anyway welcome and hugs (((()))) Mig

Boomer13

Yes, toots, you do need to give up the smokes! Maybe it will be difficult but your health will thank you. I'm sorry I don't remember when your symptoms started, but my rheum says you have a 2 year window with early autoimmune illness where the disease may be put into permanent remission with minimal medication.

I can't remember the risk factor, but smoking increases your risk of developing RA, etc, by a substantial amount. Maybe quitting could help your immune system properly regulate itself again? Hmm that might be a good question for a rheum, if your symptoms turn out to be autoimmune. It might not happen, but why not give yourself every chance?

My rheum told me after two years of symptoms, it's unlikely it will remit permanently.

If you do decide to give it up, I know you will have lots of support and help from those of us here !! Sorry about the sermon....I just know there is a strong RA/smoking connection.

Best wishes, Anna

mig

Oh and yes Toots stop smoking . Mig

Toots

Boomer13 wrote:

Yes, toots, you do need to give up the smokes! Maybe it will be difficult but your health will thank you. I'm sorry I don't remember when your symptoms started, but my rheum says you have a 2 year window with early autoimmune illness where the disease may be put into permanent remission with minimal medication.

I can't remember the risk factor, but smoking increases your risk of developing RA, etc, by a substantial amount. Maybe quitting could help your immune system properly regulate itself again? Hmm that might be a good question for a rheum, if your symptoms turn out to be autoimmune. It might not happen, but why not give yourself every chance?

My rheum told me after two years of symptoms, it's unlikely it will remit permanently.

If you do decide to give it up, I know you will have lots of support and help from those of us here !! Sorry about the sermon....I just know there is a strong RA/smoking connection.

Best wishes, Anna

No apology necessary Anna, you are right, and I know it! It's one of the things that, researching online, has made me sit and up and take note. I'll make a note thought to ask rheumy about it, although that's a while down the line so perhaps I will have kicked the weed by then!

I hadn't heard about the 2 year ideal, very interesting. I know it's not guaranteed, before you worry I'm going to take it at face value lol, but you just never know. I'm working on the assumption that the start of this was 3 months ago when I was diagnosed with bursitis of the knee. That said, I had the same problem with my knee a couple of years back. I suffered that for around 3 months and then suddenly it was gone. I have no idea whether the two instances are related or not, and of course now I have other joints involved. I've had problems with my right knee in particular since I was a teenager and it was always put down to the effects of hip dysplasia at birth, which is probably the case and as my xray showed mild OA in that knee, this makes sense. Might this have made that knee in particular more susceptible to auto-immune attack I wonder.

Toots

Thank you for your welcome Mig! And the sage advice! x

Amy86

Toots wrote:

Aww bless you Amy, thank you so much for sharing! I can't believe how differently everyone here has been treated by the medical authorities, it beggars belief for someone to tell you hey, just join a gym! Jeez I have enough hassle getting around the house let alone anything else!

I hope you're now getting some treatment after your long wait? And no, it doesn't sound silly saying you were relieved when you were diagnosed, that's how I feel too. Hurrah for private healthcare lol, I'm jealous of you!

I know, clearly the physio who prescribed the gym has never suffered swollen joints before!

I am now on methotrexate 15mg which appears to be working quite well so far. The day that I saw the rheumatologist, he gave me a strong steroid injection which worked wonders and since then, I haven't experienced anything near the pain I was in before seeing him.

I really hope you are seen soon