Do any of you get a guilty feeling when you are on long term pain killers? Practically everywhere you read "do not take for more than 10 days". How does that fit in with aggressive arthritis over many years?
Pain killers: Do any of you get a guilty feeling... - PMRGCAuk
Pain killers
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Constance13
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44 Replies
•
I have no guilt or sense of it being a problem for chronic pain. It helps you do the stretches etc that keeps one mobile and flexible. My 84yr old friend takes 4 paracetamol a day to keep going. If she stops she is stuck in the house due to a knee with OA.
I do take tramadol daily. The minimum dose I can live on is 200mg a day...not had one of those for a while. Yesterday 600mg. Day before 800mg. You have to keep it in your system to help pain. The Dr always makes me feel guilty but before I took it and if I detox for a week my pain goes from 5 to 6 up to 9 or 10. The Dr says well if you are still at 5 or 6 why keep taking it...doh. It's a big difference to 9 or 10.
Sorry I will stop my rant. It's more based on anger than guilt. 😂😂😂
jinasc• in reply to
If you friend can afford it, get her to try Flexiseq, unfortunately it is not available on prescription. Left knee OA for years and right knee is bone on bone, not able to have KR.
Cheapest I have found is my nightmare place Amazon - I wish they would play fair and pay their taxes.
Flexiseq is bio-mechanical and I am pain free 90% of the time since ARC introduced it. You can read all about it on the ARC Research site.
I only wish it was available on prescription - even if only for people with OA in their knees. Many who have tried it have found it works on the joints in their fingers as well. I am one of those whose fingers benefited.
As an aside my GP - said at your age, who cares if you are addicted.............would be a whole different ball game if you were under 70.
• in reply tojinasc
I have tried her to introduce her to it. I tried it for a while but can't afford it now. She doesn't like the idea of the bio side. She was a nurse working latterly on DLA panels until forced to retired at 74. I think she uses rhu tox when her daughter come with homeopathic kit.
I use Flexiseq and can confirm it is very good. Not cheap - but a little goes a very long way. I use it on my sore knees, really good.
Jinasc recommended this to me some years ago, but unfortunately it didn't do a lot for me. Perhaps seronegative arthritis is a bit different. Mine is also 'poly' so I'm not sure where I would start with the cream!😀
Oxford8• in reply to
🤞🤞🙂
No I don't feel guilty at all.
I wonder if those who are writing the articles are those who have experienced chronic pain.
Maybe if they put some some cash into Pain Management Clinics and more referrals were done the problem with constant pain might be improved for those suffering it but who cannot get an appointment for love or money with their Pain Clinic.
• in reply tojinasc
Exactly. I think I was "lucky" that I got fibro and pain around 20 years ago in terms of pain clinic. I was referred for back pain once, and got more physio etc through them, the second time for fibro. I had meds prescribed by the right person, an anesthesiologist, physio, psychologist for about 3months and was taught about pacing, CBT etc. I think the dark holes I go down would be much deeper and longer without those referrals.
jinasc• in reply to
I feel that you and I had a long conversation this am. As both the grocery delivery and the gardeners have arrived together - tea is called for. 😉
I have been on tramadol for years after wrecking my shoulders on a dive and no i dont feel guilty at all. I have has 9 operations on my shoulders and had right one replaced and I still have pain so I am not the least but concerned about taking pain killers. If i need them then that's all there is about it. My only word of warning is not to take too many paracetamol.
I take 2 Cocodamol in the night and 2 during the day. I DO need them but feel I should try and do without them.
I never feel 'guilty' at taking Pred, daft , isn't it? But seronegative poly arthritis doesn't go away, what else could I do?
• in reply toConstance13
Is it the otc 500/10mg cocodamol? Not that it makes any difference if it was 500/30 prescribed - just nosey. I don't think that's unacceptable. As you say you need it to manage pain, just like pred does for PMR. Have you been getting any external pressure about it?
Constance13• in reply to
500/30! No pressure, just me trying to "do my best".
• in reply toConstance13
I am glad you put do my best in inverted commas. For me my best is to be as active and healthy as I can be and do thing like stretches, exercise etc. But it's also about managing pain, with all its soul destroying uncontrolled manner, by pain killer as required.
A few years ago (pre-pmr) when I was 50ish I was having a bad day with pain/fibro I did an online free longevity quiz as a distraction strategy. It told me I had 30years life expectancy. I burst into tears and shouted I can't live another 30yrs like this...don't make me! The dog looked at me weirdly but I am used to that. I don't want a life of intolerable pain for 30yrs. Tolerable pain is bad, but liveable if you can get out and about and have a good quality of life.
Blearyeyed• in reply to
Been there , done that , cried buckets into my t-shirt !!
Reading someone else doing it , although it is so sad , did make me giggle.
" Gallows Humour" again , it's just good to see I'm not the only one who does daft stuff like that.
That's not a huge amount and if you need them you need them. Simple as that.
I have had sero negative inflammatory arthritis for more than 25 years now and have settled into a stable state that involves me taking Leflunomide, meloxicam (anti inflammatory) daily and a weekly etanercept injection. In addition I take 2 cocodamol (30/500) every night. I cannot cut down on thise pills and even reducing to 1 plus 1 paracetamol makes me unable to move next morning. I have just had to accept that this is what my body needs to function. One good thing though, since taking pred for PMR, (down to 7.5mg, yippee), I do not have flare ups of arthritis. 😊
Dump that guilt Constance! If you need it you need it.
DorsetLadyPMRGCAuk volunteer
No!
If it makes your life more bearable why should you feel guilty. If you didn't need them, you wouldn't take them! No one takes legitimate medication just for the fun of it.
If you didn't relieve your pain, you would be depressed, probably immobile and a burden on others!
Take what you need, but make sure you are monitored for side effects.
Yes. Not so much now though. If im very stiff and sore in the mornings - which is most mornings - my legs are usually the problem - i take some but dont use the hard hitting ones that would probably have a better effect. I get real bad side effects. My legs have been a problem for years. Though my smart ass rheumy told me to "take solpadine" when she was prematurely taking me off the pred! If we need it we need it.
PMRproAmbassador
I have no guilty conscience about taking anything I need to have a decent quality of life. Because without that - you might as well be dead...
True! I just wondered whether people took pain killers willy nilly.
I have popped a few more in just recently and felt a bit guilty - daft I suppose.
This cold May weather has got to me!
• in reply toConstance13
There is so much talk in the media about opiates that people who need them get caught up in the societal finger pointing. As I said my dosage alters with the weather, stress, overdoing things etc. I am sure you are just experiencing different levels of pain. I think everyone has a level they can stand,then no more. Paracetamol based painkillers are the ones I am most careful of. Don't let "them"* get to you.
* drs, papers, people without pain etc.
I use narco,(vicodin) for spinal stenosis pain, and have for years. Recently my medical provider management company has initiated a drug -use -monitoring- protocol that makes me feel like a criminal for using a prescribed narcotic. I must now provide a monitored urine test every time I get a narco script from my g.p.
This is what happened In front of the other patients in the lab, and the other staff. The tech collecting the urine screen dumped a colored solution into the toilet, instructed me to pee in the cup, and return to the common area, peecup in hand, without washing my hands or flushing the toilet. He then dumps the urine into a temperature indicator cup which tells him that the u.a. Is body temp, or not.
In my pre retirement life, I supervised drug offender felons in this exact way.
What I want to know ,... is how...A 72 year old woman got moved to the drug abuser category, for purposes of slowing down the opiate abuse problem in this country.‼️‼️‼️‼️
And...I now get a phone call from a 12 -year -old -important- person, whose job it is to tell me I can no longer have a glass of wine, if I want to receive narco script in the future!!!
🤬🤬🤬🤬🤬🤬🤬😱😱 can u tell I'm ticked!
Aaaarrrrgggg👿
Oh dear! I'm sorry but your post made me smile! I know it's inappropriate, but all that just to get the pills we need. Are we now all to become criminals?
On a serious note - I phone my chemist, she gets a prescription from my doctor and delivers all
my pills to my door. The doctor has NEVER questioned this. He knows what I need. It's ME that wonders "do I really need all these"?
💐💐
• in reply toPurplecrow
Omg. I can imagine the humiliation. It's a terrible state of affairs. There will be more pain sufferers walking the street to buy heroin, ketamine or fentanyl etc in future.
Since my last visit to my gp, I feel i have definitely been shifted from patient with chronic pain to a druggie with drug seeking behaviour. All because I asked for cocodamol to manage breakthrough pain. Up to last year they were on my repeat prescription but they took them off. I wasn't concerned really as I take tramadol daily and if I wanted it reduced strength cocodamol was available OTC. But I took them for a few days when I was having a fibro flare and didn't helped. Hence Dr appt. Until they went to OTC status there was never an issue at the drs.
It's disgusting. 😱
I am so sorry to hear that your provider is putting you through these horrors. At first I thought you might be writing from Russia, but I see you're in Washington state. I certainly hope this is not the new wave of healthcare in our country. Have you spoken to other people going through this ? It's time to rise up and raise cane! Surely there's a more dignified way to protect the public from themselves. This is no way to treat an older person who is obviously suffering and needs relief.
• in reply toSofarbrnun
I am in the UK but have communicated with a few US citizens impacted by new laws regarding opioids. Here's Harvard's overview.
I suspect the point is to make it such a hassle for docs to prescribe opiates, that they simply refuse to do it. Dont know where that leaves us....i know when I had a dental extraction , I was unwilling to accept a pain script from the dentist because I had signed a drug agreement prohibiting me from receiving narcotics from anyone but my primary doc.
The prescriber must also check a database to be sure the patient isnt receiving script from anyone else.
Yikes, common drug abusers we have become!
• in reply toPurplecrow
I await the next development. They tried restricted prescriptions a couple of years ago. You had to see the dr everytime. That lasted 2 months. Not enough appts. That tells it own story I suppose.
😕😕😕That is absolutely horrible pureplecrow! I would be madder than a wet hen if that happened to me. Grrrrr!!
You have pretty much described how I feel. I am planning to write a letter of complaint alleging violation of privacy within the lab arrangement. Seems that the rules being dictated by higher ups have left the tech staff without proper facilities to conduct their business. Result, the Patient/perp/me having to carry a cup of pee with bare unwashed hands through the common area where other patients were being treated. Ain't proper sez I, so lets fire off a letter of complaint to the medical CEO and see if they can provide their minions with proper facilities in which to carry out their duties.
Nuff said... cheerio💃🏼
😂😂😂😂😂
I haven't been guilty for my recommended pill popping for years.
In health there is always one rule for standard use for normal conditions for the generally fit human being and another rule for Chronic illnesses and the long term sick ( is that rule called " The eventually just nuke it !!!! everyday, with everything you've got , until we get it right Philosophy" ).
Although , some days I wish that it had not become normality to not feel functional unless I took enough drugs to make me into a human maraca .
Or the long past days when even getting down a tiny contraceptive size pill felt like a struggle to swallow.
Then I remember , it's better to sound like a Marching band when you get up and walk than not be able to walk at all.
Right off to take my night time quota , hugs , Bee xx
Bee! Thanks for the humor and the truth!! 💜🙏🏽
I'd been on Paracetamol for nearly three years following a spine bone fracture in March 2016, when an ulcer developed in my left big toe. The pain from this toe added to the fracture pain, reactivated Osteoporosis and lumbar region pain, meant that Paracetamol wasn't coping with my pain levels. G.P. suggested I tried Co-Codomol 8/500 and the relief was instant. On top of this and a direct result of my spine fracture my legs don't work properly, as I have to lift them into my vehicle cab with my hands. A G.P. locum said when I saw him two weeks ago that my natural defences were not working properly to explain the skin condition that has broken out and I'm currently on my 9th prescription for antibiotics since last November. Practically the first thing said to me when I joined the new surgery in 2017 was we'll get you off the Paracetamol as soon as possible. I think my reply was along the lines of "over my dead body I'm taking 8 a day to control pain from my fractured spine" on top of an obscure life time condition that is very rare. I forget how I used to deal with rib fractures and I've had a lot. The steroids for G.C.A. have really screwed up my memory in the 5.5 years I've been taking them, but I have at last determined the maintenance dose that keeps me ticking over.
I don't regret the time on Paracetamol the spine one fracture pain was debilitating i couldn't have functioned without them.
Regards
Colin
Hi Colin - nice to hear from you.
I know your history and when I read your posts it makes me more guilty than ever!! Not because of the pain killers, it's because I am ashamed that I moan about PMR and PA!!! You've had a tough life, but you just carry on and keep cheerful.
💐🍾🍸
Hi Constance,
Don't be guilty we all take relievers when we need them. I had a pretty fantastic life with Janet and she suffered for 51-years with Auto Immune Hepatitis until 2016 when she passed away. All my woes started with her departure, except G.C.A. which started in 2013. None of the off-the-shelf analgesics touched the headache I'd suffered for 30+ days but Janet bless her accompanied me to the G.P. surgery waving her bottle of Oramorph (Morphine Sulphate) left over from her second lot of 5-teeth extraction Biphosphonate caused soft gums and they said yes we will let you have some of the Oramoph and it did ease the frightful pain in my head. Referred to a Neurologist and she prescribed the wonder drug Prednisolone and all the pain had gone in 3-days, though it took two and a half years to taper down to 10 mg. I've just had my third flare and again the headache went as soon as I raised the Pred. from 5.5 mg to 6.5 ,mg. My Rheumatologist doesn't understand why I use Pred. for pain relief because there is nothing else that is effective.
I haven't forgotten that I owe you an explanation why I changed my e-mail and nom-de-plume. It is a difficult thing to explain especially as I inadvertently sent the unabridged version into the wide wide world in error rather than sending a reduced version. The original version was quickly deleted by Kate Gilbert and PMRpro and I will get round to sending a shorter version. eventually.
Regards
Colin
Hi Colin! Silly feeling guilty, as others say, "if you need it you need it". Strangely I never feel guilty about using Pred (pain/discomfort too severe to ignore).
You DID explain to me why you changed your name and email (perhaps I read your post before the powers that be cancelled it).
Hope you are doing OK - so sorry Janet (and you) had such a pain filled life. It makes people
like me put things into perspective.
Keep in touch. Kindest regards from Constance. 🍾😎🍸
Here in the US, paracetamol/tylenol is available over the counter like Jelly beans. I go to costco and buy them , in packaged lots of 1000, 500mg tablets, for $15.
I do think the Paracetamol/Tylenol is one substance that needs used with caution to avoid liver damage. So many other over-counter and prescription drugs contain the substance, and its easy to top the recommended daily limit.
Sometimes I feel like a hamster in a wheel, spending my day chasing pain, of one kind or another!
Cheerio,💃🏼
I don't want to "chase" it - I want to "blast" it.😂😂
As I mentioned I take Co-codamol (prescribed), I only allow myself 3 or 4 in 24 hours. It's not really enough but I don't want to cause other problems.
In the UK there is a limit to the number you can buy at a time - you certainly couldn't buy it in that sort of quantity - for exactly that reason. Of course, it won't stop anyone, just makes it a bit slower to acquire large quantities.
All they have to do is make the tablets with the antidote - but then they would cost more. It is not a nice way to die - we had a patient in ICU when I worked in the lab. Had had a row with her bloke at New Year, took a load of paracetamol and some sleeping tablets with a bottle of vodka. The regrets came too late.
• in reply toPMRpro
Similar story my sister told me when in wards. A young man did it the same way and was screaming I don't want to die. Makes me VERY careful around paracetamol.
Now I'm a Kingfisher I feel more at home with others who have similar interesting names.
In the U.K. each prescription of 112 tabs (peculiar to me) also contains a leaflet from the manufacturer warning of exceeding the prescribed dose (no more than eight a day) otherwise risk of liver damage, and if you exceed dose see G.P. or local A & E Department.
My wife had severe liver damage cause by Auto Immune Hepatitis, she was on Steroids as well for fifty-one years and unfortunately the condition killed her. I'm not sure what is finally going to get me because I have so many conditions and so much medication. One thing that I will always be very grateful for is the so many friendly and knowledgeable people on the forum. They helped as well when Janet passed away and the Depression descended.
My Klinefelters makes it very difficult for me to have social intercourse with everyone. I can talk on the forum and exchange posts but face to face contacts are a non-starter, likewise I don't make friends very easily. This is truly the worst condition known to man (Girls can't get it so you will understand why I've dislike my twin sister).
Best wishes
Colin
Can't be too bad Colin. You managed to 'hook' Janet and she saw you every day!!
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