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4 months 3 days ago #28466 by jra94549@bigpond.net.au
jra94549@bigpond.net.au replied the topic: Introduce Yourself Here..... Hi my name is julie & this is my first post.
My motivation for joining the group is to relate my experiences re the restrictions to codeine & opioid meds. I look forward to hearing of others experiences & any advice will be very welcome. I have suffered with severe almost daily headaches since 2004. These include classic migraine with aura, tension headaches involving severe muscle spasm, of the neck & base of skull. Additionally I have severe encroachment of the nerves at C2-3 & C4-5, which results in not only neck pain but additional severe headaches. Since 2004 I have been taking tramal 400mg daily, Until 2014 I took digesic x4 daily, this was stopped by a pain clinic specialist, who then did not offer an alternative for breakthrough pain, so I was forced to substitute digesic with mersyndol (night)x4 which I had to buy over the counter. I also use valium 10 mg up to twice a week for the muscle spasm & naramig 1-2 tabs per day( a specialist migraine drug). Also I have botox every 3 mths for the migraine. This regime of meds has enabled me to function adequately & have some quality of life . My GP has been increasingly reluctant since around 2014 to prescribe the tramal, valium . Since 1st of feburary 2018 she has refused to write these & now also mersyndol scripts & insisted I return to the pain clinic( which I have previously visited without success. They implanted an occipital nerve stimulator & tried me with stronger meds which I do not tolerate well). Between 1st of feb. & the 15th when I managed to get an appoin ment at the clinic, I had to get scripts from my neurologist. At the clinic the pain specialist also refused to continue to write these scripts, telling me I have to come off the meds by being admitted for ketamine & lignocaine infusions, combined with norspan patches over 1-2 wks. The assumption is that I will have less pain if I come off the meds & should be able to manage by doing the course offered at the clinic. For years I have been using similar strategies, but only due to the meds giving me the option. My GP has told me that all patients with chronic pain,must attend a pain clinic & that GP'S must be given authority every 3 months, to be able to prescribe any opioid meds. I would like to know if anyone can tell me if this is accurate ? I am also interested in the ethics of my doctors actions as I feel I am not being heard and have had any choice about my care taken out of my hands. Basically it's there way or the highway. If I don't agree to go through with thier plan, they will not prescribe my medication, where does this leave a chronic pain sufferer, who has relied on these meds, to suddenly no longer have access? I have been living in fear & uncertainty, with the threat of this since approx. 2014 & it has now become reality. The other area that I need advice about is about driving, my GP tells me that she may be obliged to report me for driving whilst I continue to take meds ,waiting for admission which won't be until second half of april. I live in an isolated rural area,with no public transport, I am also carer for my 90 yr old mum ,who is very frail & unwell, & rely heavily on my car, for every thing. At the time my GP mentioned this she told me, a GP had recently been sued as, he had a patient on meds, who was involved in an accident, & he was accused of not informing that patient not to drive ? I feel my GP is afraid of being implicated in something like this, & this is colouring her treatment of me. How much truth is in this if any, & what are the longer term implications,for people on meds & driving ? Thanks for taking the time to read all this. I am in a bit of a state at the moment & needed to get some of what's happening off my chest, & to get some accurate feedback about what I am experiencing regards julie

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4 months 3 days ago #28467 by Mango
Mango replied the topic: Introduce Yourself Here.....
Hi Julie,

Welcome to the CPA forum, it is filled with info and people who understand.

Much of your story resonated with me. I found myself in a similar situation on Feb 1st in reference to Codiene. He was happily giving me a script a week, and then come Feb 1st he stopped. I am still a little confused to the changes in scheduling for codiene and opiods. Check out the thread here : Codiene Scheduling Changes

I agree it is frustrating, they happily have you travelling along a path, you are managing and then suddenly some one decides that codiene is the new big bad, and the route is changed. And there’s not a damn thing you can do about it.

As to the driving, I understand completely. I too live rurally and have Mum (lives with me) and my brother (lives independently) who need assistance. I am very careful with driving as I know if there is an accident and I am under the influence of my meds I am liable. I’m not sure if the same could be said for the doctor though. I think it maybe someone trying to pass the buck. Personal responsibility doesn’t seem to a big thing in our society these days. Sadly I’m not legally trained in anyway, so I can’t advise.

Please make your way around the forum, lots of great stuff.
Mango

"It's time to play the game" HHH
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4 months 3 days ago #28468 by Mango
Mango replied the topic: Brand new member Living with Ehlers-Danlos Syndrome Hypermobility type
Hi Alex,

So pleased you found this forum. It is a great place to find information and people who just get it. I hope you are feeling better today.

I’m starting to think that the whole “You just have to cope” is the new cop out for doctors who put us in the “too hard” basket. I wonder if they would just “deal with it” if they were in the same situation? You are not alone in your frustration. As unhelpful as that knowledge is, I know. Sucky.

Again, I hope you are having a better day today.
Mango

"It's time to play the game" HHH

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4 months 3 days ago #28469 by Mango
Mango replied the topic: Introduce Yourself Here.....
Hi LoubyLou,

Welcome to the CPA Forum, a great source of information and people who know the frustrations. Another doc telling another patient to “deal with it”. May not do more damage but by heck it bloody hurts. I’m so sorry you’ve been told that. Sadly I have nothing to offer in way of advice. Other than to perhaps seek out someone to teach you pain management techniques. I learnt mine from a psychartrist that specialised in chronic pain years ago. I think the new thing is something called a multidisipline pain clinic. Peter seems to be the expert in them. Personally I have not had good experiences with pain clinics. I do have a great doc who has a maters in Chronic Pain, so he what I use all around.

I hope you’ve had a better day today.
Mango

"It's time to play the game" HHH
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4 months 2 days ago #28473 by Johnno
Johnno replied the topic: Introduce Yourself Here..... Hi my name is julie & this is my first post.
Hi Julie,

I know the knee jerk reaction has hit a lot of people with a broadside but I know there is work being done by not only us but by others so I think things may level off and doctors may become more sensitive to those of us who suffer chronic pain .

I was advised to come off Tramadol 150mg about 2 years ago and my pain specialist advised me to go on to panadol osteo as they are a slow release pain medication and is still available over the counter , have a chat to your GP and ask him/her what they can prescribe for what your pain is .
I have a great rapport with my doc and we discuss where I am and what changes are required if any , he is also in touch with the pain specialist ,psychologist,nuerosurgeon and my Physio .
You could also discuss with your pharmacist about whether they have any suggestions , these guys are great as their job is knowing medications so sit down with them and see what you can come up with.
Remember doctors especially GPs are the front line and it’s hard for them to weed out the patients who are only shopping for fixes (I’m not saying that anyone is ) but it is hard for them to discern the bad from the good ,so checking all options is a good start.
Cheers

Johnno

as long as I wake up alive I'm happy
Because it could be worse
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4 months 2 days ago #28474 by illeatyu
illeatyu replied the topic: Introduce Yourself Here..... Hi my name is julie & this is my first post.
Hi Julie,

In NSW the law is to get my PBS subsidised scripts i'm on Targin 80/40mg twice a day, I have to be reviewed by another doctor every two years, so usually I pop off and see the Pain specialist in Penrith.

My doctor is also hesitant to prescribe opiates but we have tried everything else over the last 7 or so years, I believe they have to be able to prove that they tried the other options and that they have offered you other non opiate options. As I still work full time I cannot attend a pain clinic as they are all during the week and extend for longer than I have time off, but we have tried other combinations of meds and meditation and stuff.

Previous to my current doctor I had two very bad one's and had years of misery and pain even went suicidal at one point, the point I am trying to make is that maybe you need to change doctors, try and find one who either has some experience with chronic pain or conditions, or find one who will listen and try and work with you to give you the care you need.

We are I believe the most miss understood group of patients us people with chronic pain, if we could transfer our pain to the doctors and decision makers for a day we would be inundated with help but we can't so we have to try and live with what we have, but that doesn't mean we have to settle for second rate care.

Anyway that's my rant over, if you need help this is a good place to start.

Regards

Ricky

“All the elements in your body were forged many, many millions of years ago, in the heart of a far away star that exploded and died. That explosion scattered those elements across the desolations of deep space. And came together to form you, you are unique in the universe.
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