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1 year 1 week ago #27830 by Juliemackay590@gmail.com
Juliemackay590@gmail.com replied the topic: Venting
Hi Myalgic 1,
My GP's argument for not prescribing strong pain relief is that once our body is used to the initial dose we'll need more and more until it has little or no effect but we're addicted and still screaming out for pain relief. This happened to me and I was weaned off all my opiates which in addition to still living with the pain was a journey I never wish to repeat. Albeit that I do at times wish I had just one Endone to give me that sweet sense of feeling normal and pain free ... now but a memory.
Julie

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1 year 1 week ago #27831 by Harpy
Harpy replied the topic: Venting
Oh Julie,
This is so true, I am in the midst of reducing and coming off all my meds. Pains specialist say I am doing incredible ( though my body tells me otherwise.
This doc described in total detail that because I have been on such high doses of meds so so long my body was acting partly in withdrawal and as if I wasn't taking any , so I either up my meds to ease this freaking CP or cut down and off all meds . So when I do get these blasted flare ups a few days on a low dose med is going to help. PS words no my own.
Back in march was the first month but we cut out too much lryica to start with and my life wasn't quiet good.
I am your most sceptical person as few years ago I was belittled and the other 30 people on this first introduction to pain management we were told " we could fence our sheep off from walking the same paths to the dam for water, well I didn't know I could fence my head off from my body to stop pain , what a bloody rediculas comparision to make . Along with little snips here and there.
But you should be able to be prescribed something for those days when it's just hurts like hell.
It don't seem right.
Take care
Harpy

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1 year 1 week ago - 1 year 1 week ago #27832 by Peter
Peter replied the topic: Venting
Hi Everyone,

I just want to make a comment on this topic of Opioid use and what the doctors are saying about it today.

This story you are being told that Opioids are of no use for chronic pain sufferers and that if you take them you become addicted then you want more, is an absolute lie. You need to understand the back story.

A lot of what doctors and the govt are saying is true, but it is only true for one reason. And that reason has been the over prescribing of Opioids and at high levels also.

How many of you are on multiple Opioids and those levels are individually quite high?

I don't know how many times I have read posts here written by our members who tell us they are on 100mg of this, 300mg of that, the another 200mg of yet another Opioid for so-called breakthrough pain. I mean, what the hell is 'breakthrough pain' when it is home? I never heard of such a thing, until we started this forum up.
They used to call it a 'flare up' and you dealt with it by spending that day taking care of yourself and resting. But now the doctors gave it a new name and then prescribed drugs to help you get through. That is just insane for most of us. Yes some people need the drugs, because they suffer some bad problems, but most of us do not need more drugs.

Do you see where I am coming from here?

Doctors have done the same for pain as they did with antibiotics. Over prescribed the Opioids, give no other alternatives, then the consumers became dependent on the drug. Now, there is one thing that has been proven and I can vouch for it, because it happens to me. Too much of these drugs will increase your pain levels and you will think they are not working, so you ask for more, which then only compounds the problem and makes you a whole lot worse.

Fortunately for me, I only ever had high levels of Opioids once (2003/2004) and after 9 months I ended up in hospital with Serotonin Syndrome. I was taken to the hospital almost fitting, with my arms and legs flying all over the place uncontrollably and my brain felt like a recurring bomb was exploding inside of it. I thought I was going to die. I later found out through some research, I could have died if I had of kept taking these nasty drugs.

I know of so many people who have lived their lives on low dose Opioids and do not require anymore drugs. They are plugged in to life and society and they are mobile. The drugs keep them going, but don't take away all their pain. They have learnt and adopted other therapies and methods to self manage their pain and simply use the Opioids to take the sharp edge off. AND THEY BLOODY WELL WORK!

This is the case with me and quite a number of others in our membership as well. We do not want more drugs. We are on low doses and I doubt we are addicted. Even if I was addicted, the fact I only take Codeine in small doses, means it would take no time to rid myself of the addiction and also, the addiction level would be very small.

So let's say I stop taking Codeine to satisfy this idiot govt, but my pain then goes up to a level that prevents me from plugging in to my community and doing my volunteer work with Chronic Pain Australia and within my local community as a Justice of the Peace. What happens then Mr. Govt? What do I do then to take the sharp end off my pain, when going to the gym regularly like I do, plus doing all the other activities I do, has zero effect on the high level of my pain?

I have to take the low dose of Codeine so that I can get through the day. I suffer over 80% of my pain, because the drugs barely cover 20%, but that is my choice. I would love to take a stronger Opioid that would help with the trapped nerve in my neck, but the truth is, all those stronger drugs make me very sick and I risk being put in hospital because of them.
That trapped nerve has me awake most nights due to severe pain, plus I get regular migraines that I have to deal with also.

So after suffering chronic pain and disabling back problems from old motor vehicle accident injuries for the past 57 years, I have now come to the conclusion that you can tolerate a lot of pain if you train your mind to accept it. You need to not 'catastrophise' every single bit of pain and stop worrying about it. You'll know if you have injured yourself. The fact is, just because it hurts when you do something means zip. You haven't hurt yourself, it's just your brain trying to stop you from working, because it is scared you will hurt yourself and is trying to protect you.

Do what I do, just ignore it and after a while it just goes away and my pain levels return to their normal 8 out of 10, instead of blowing out to infinity.

What we are being told today about so-called research saying Opioids do not have any positive effect on chronic pain is utter bullshit and none of you should listen to it.

High doses of Opioids ARE USELESS against chronic pain!

None of us can take high doses for more than a few months max. Then they need to be reduced right down and a replacement therapy and regime MUST be put in place.
Problem is, hardly anyone out there in the medical profession is offering anything else to pain sufferers.

There are some great pain clinics and some great clinicians, but they are few and far between. Waiting lists are months to years long and the biggest problem is most GPs are ignorant by accident or on purpose and they refuse to help pain sufferers long term, purely out of a reason of covering their own arses.

If you all want things to change, then become proactive about your health. Stop allowing your health to be dictated by doctors and take charge. Get out and start moving, reduce the drugs you are on and get used to having more pain, but STOP the anxiety and panicking about the pain. If it is too much, then take the drugs as a first aid treatment. But make sure you do all of the above in full consultation with your GP. If you actually tell them what you want to do, most of them will get on board with you and give you some assistance.

The problem with most GPs, is that they are bogged down in work and red tape. Most of their responses are not belligerent, it is just that they don't have time or the energy to perform miracles and they then despair. So it is easier to just get you out of their room, so they can deal with someone who has something broken.

If you go in there and lay out a plan, it takes the responsibility off of the GP and they breathe a sigh of relief. Then they will help you as much as they can. If they don't, go find one that will.

The other thing you can do, is start writing letters to your local, state and federal representatives and loudly bitch about their ridiculous attitude over the use of Opioid drugs. Tell them that there are many people living fulfilling lives while taking low doses of these drugs and that they should be left alone.

Anyway, I wish all of you the best. Just remember, chronic pain is often like a lifelong disease. You may never get rid of it, but you can most certainly learn to live with it. Some people have been able to drop their drug intake down to near nothing, but most of us have to take pain meds 3 times a day. Just accept your lot, be positive and shrug off your pain, then plug back into your life.

It's not easy at first, but it is doable!

Take care!


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
Last Edit: 1 year 1 week ago by Peter.
The following user(s) said Thank You: Mango, Juliemackay590@gmail.com

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1 year 1 week ago #27833 by Michael
Michael replied the topic: Venting
What you wrote is spot on. It's how I live my life, pain is there 24/7 but most of the time I ignore it and continue on.
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1 year 1 week ago #27834 by myalgic1
myalgic1 replied the topic: Venting
Hi, Peter...
yes, that's me! I function really well on low dose oxy, with endone for when I have to drive for more than half a hour , endep for depression and the very rare valium when my anxiety explodes out of control. I only use 30mg of oxy a day and according to the 2017 guidelines for practitioners who prescribe opiates, this is not a high dose. A high dose according to those guidelines is 80mg a day - a low dose being 5mg. The guidelines make interesting reading and gives insight as to why gps are suddenly trying to guilt their patients for being dependent on meds for quality of life. I am not ashamed in the least to be dependent on my meds fora basic quality of life as I know that without them, I am bedridden and suicidal. A life is for living, not for spending your days writhing in pain and fighting the urge to top yourself.
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1 year 1 week ago #27835 by Juliemackay590@gmail.com
Juliemackay590@gmail.com replied the topic: Venting
This is interesting for me. For all the years I was on opiates and oxy's I would tell my doc after a while I was in more pain and the dose was increased. But you're giving another view where a low dose is taken and then life is doable . I wonder if I could do this and whether my GP could be convinced too. I know I have very little willpower or mental strength. But today is day 10 of staying horizontal because it's so painful to do anything like live a life. I'm waiting to "come good", but this time it's not happening and I'm becoming very anxious. I need to visit my aged parents, especially my Dad who doesn't have long.

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