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4 months 1 day ago #28480 by fingers
fingers replied the topic: Introduce Yourself Here.....
Hi all,

I will see if I can clear up a few questions that have been raised since my first post and ask a few myself.

In regards to

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 do not believe these two statements to be true. I previously saw my GP every two weeks for a box of Fentanyl and it wasn't until years later that she suggested that I might benefit seeing a pain specialist. With the second question if you go on the PBS website it stated that only one box with no repeats can be given, but if you look in the notes it says:


Authorities for increased maximum quantities and/or repeats will be granted only for:

(i) severe disabling pain associated with proven malignant neoplasia; or

(ii) chronic severe disabling pain not responding to non-opioid analgesics where the total duration of opioid analgesic treatment is less than 12 months; or

(iii) first application for treatment beyond 12 months of chronic severe disabling pain not responding to non-opioid analgesics where the patient's pain management has been reviewed through consultation by the patient with another medical practitioner, and the clinical need for continuing opioid analgesic treatment has been confirmed. The date of the consultation must be no more than 3 months prior to the application for a PBS authority. The full name of the medical practitioner consulted and the date of consultation are to be provided at the time of application; or

(iv) subsequent application for treatment of chronic severe disabling pain not responding to non-opioid analgesics where a PBS authority prescription for treatment beyond 12 months has previously been issued for this patient.


This can be found by going to the PBS website http://www.pbs.gov.au/browse/body-system from that page if you go into Nervous system then analgesics all the prescribing info can be found there.

In Queensland we have what is called "Jet's Law" where basically if you have a medical condition that effects your driving it has to be reported. This came about after an epileptic driver had a seizure on the highway, crossed the road hit an oncoming car which resulted in a 200km/h impact. Jet died and his mother Anita who was a police officer and who I had the privilege of co-facilitating Zero Harm training sessions with, pushed for laws like this to be put in place.

When I was younger I was seeing a psychiatrist who believed that opiates should only be prescribed for cancer patients. I am an honest an open person, so when I told him that my GP gave me one box of OxyNorm he wrote a letter to the clinic saying do not prescribe this patient pretty much anything. I had to change clinics because when I went back, the distrust and hatred that the doctors showed to me was unbearable. Mind you this psych was happy to give me 300 amphetamine tablets a month.

Currently apart from the pain meds; panadol, mobic and PEA I also take 6mg of Clonazepam a day 120mg of Phenobarbital a day and 20mg of Valium PRN for muscle spasms. also taking Avanza and Pristiq. But I think that there must be something wrong with the way my body processes medications, for example I have insomnia and no medication will put me to sleep, I hear people getting a buzz or altered mental state from their medication, this does not happen for me, not with opiates, benzos, barbiturates, Ketamine and such, which could be considered a good thing I guess because I can't become addicted to them. I can start and come off medications instantly with no side effects, even when the dose would kill most people.

Also what do people think about supplements? I have been told to take Vitamin D, Vitamin B6 P5P, Zinc picolinate, multivitamin, 10g of fish oil, magnesium, L-Glutamine and probiotics.

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4 months 1 day ago #28483 by Peter
Peter replied the topic: Introduce Yourself Here.....
Hi Fingers,

Regarding the supplements. I would be very careful taking any of them without speaking to your doctor and/or pharmacist to ensure that none of them will react with the other drugs you are on.

I take Blackmores Bio-magnesium twice a day for muscle cramps and restless leg syndrome. And I take Flaxseed Oil capsules 3 times a day, because my gut cannot tolerate fish oil of any kind. Both of these oils are efficacious and pretty harmless, and we do derive benefit from them.

As for all those drugs you take and the fact that there seem to be some that don't seem to work, there is a high probability that you are over medicated. I've seen this before. People have come to the forum describing the cocktail they are on and some of them quite strong and in high doses, but then other strong drugs too, plus keeping some strong Opiates in the cupboard to use as a first aid for flare ups. This is madness!

I do remember one chap some years back who decided to go back to his doctor and ask for a full review and to see if he could weed out ineffective drugs. So they kept him on what he knew was the most effective drug, then started weaning him off the others one by one, slowly. In the end he remained on a few, but was able to ditch a couple, which were at that point redundant.

If you have any suspicion whatsoever on this, do your poor body, especially your liver, a favour and go to your doc and ask them to do the exercise with you so you can see if there are any drugs you can get rid of.

They (researchers that is) have found that people like us do become sensitive to all these strong drugs and in many cases they just stop working. Problem is, what is our liver supposed to do with this poison? Well, it just uses fat to hide it and that means we just keep putting on fat and the poor old thing just struggles to process them all when it may be unnecessary.

They believe that people who are on all this medication can often find that the medication can actually increase the pain levels. They cease to be effective and actually start working against us, because our bodies are reacting to them, just like you get that pounding head ache from being hung over, but worse.

There is one thing all of us who suffer chronic pain MUST realise. Drugs of any kind should never be the main therapy we have to ease and control our pain. In fact they must be the smallest therapy!

We must be using exercise, education, distraction and any kind of psychological tools we can find that keep us at peace. Mine is music. I always have favourite soothing music going in my house and it really does work. Plus I go to the local gym twice a week for an hour each time, doing movement exercises and lots of walking, with a group of oldies. BEST THING I EVER DID!

This exercise has kept me mobile and off my fat arse. I am more plugged in to the community now than I have ever been, since I started going to this class at the gym almost 4 years ago.

As much as the govt, medical profession and the TGA need to rethink their strategies because they are going to harm some people, WE consumers also MUST rethink what we are doing too and start to help ourselves and take full control over our pain management plan.

Once you do that, you will have a lot more co-operation from the medical profession and our lives will be so much better!


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)

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4 months 1 day ago #28485 by pamcarr
pamcarr replied the topic: Introduce Yourself Here..... Hi my name is julie & this is my first post.
hi Ricky,
I notice you attend Penrith Pain clinic, I am in Penrith, we should start coffee club, if there is any other western Sydney or any Sydney pain people out here, all welcome, more the merrier

Pam

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4 months 1 day ago #28486 by fingers
fingers replied the topic: Introduce Yourself Here.....
Hi Peter,

That is some really good advice in your post, whenever I see my doctors I always make a list of EVERYTHING that I take.

The problem that I have is that I am getting advice from different sources, my mum hates medication and wants me to take the natural path so I see a naturopath who tells me to take all these supplements then I can reduce prescription meds (my musculoskeletal doctor advised me to see a naturopath too) my GP says that all the supplements are crap and not worth it and just to take my regular medications.

Apart from Chronic pain, tendonitis, and Ehlers-Danlos I also suffer from chronic insomnia, major depression/dysthymia, Essential tremor, RLS, Anxiety and ADHD. with all these conditions and all the pills I take I basically have to be my own doctor. For example today I was prescribed Doxycycline, neither my doctor or my pharmacist said anything about interactions, even though they had a list of everything I am taking so I looked into it and found out that the Phenobarbital I take dramatically reduces the half life of Doxycycline but the Vitamin B6 and D3 reduces the concentration of Phenobarb and another thing I take increases it so as a result I have to take a double dose of the antibiotic (as advised by my pharmacist when I pointed it out).

So really I don't know what to do, everyone I see for advice tells me a different story.

But I do see a physio every week, do Pilates and swim every week and plan to do more when the temperature improves.

AAAARGH

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3 months 4 weeks ago #28493 by Fibro fuzz
Fibro fuzz replied the topic: Introduce Yourself Here.....
Hello,

I’m new to the forum, newly diagnosed with fibromyalgia after more than two years and many many specialists, hospital stays and doctors appointments.

The diagnosis was somewhat of a relief, in that finally I had someone who believed and understood what was going on with my body.

But it’s also been so so hard, dealing with the symptoms, and the knowledge there’s no cure, very little in the way of effective treatments and just the general lack of support from friends and family.

After my diagnosis literally every person I told said it was a good thing. Not one person stopped to think how I would feel or give me any emotional support.

I don’t know, I guess I’m still coming to terms with it all. It’s hard.

My rheumatologist prescribed cymbalta which was a massive disaster, I ended up awake for more than 72 hours after taking it, shaking uncontrollably, nauseous, hot and cold sweats, dry mouth etc. Two weeks out from taking the single dose which caused all those symptoms, I’m still feeling the effects, waking at 4am every day.

I’m sorry, I didn’t mean to complain so much, just wanted to say hi I guess.

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3 months 4 weeks ago #28494 by Johnno
Johnno replied the topic: Introduce Yourself Here.....
Hi Fibrofuzz,
Welcome it’s not what most of us want to hear I’m sure , most of us wish we hadn’t heard of CP never mind suffer any form of chronic pain.

This site has a lot of info to help you to potentially understand fibro a bit more ,we don’t offer cures but we can offer sympathetic ears .

There are some extraordinary members who will send messages of hope and some may be able to ease your pain especially those who have been suffering for way too long (Gandalf the grey) and some newbies who are bloody incredible .
So troll through the forum and check out the sites that are of interest and if you want to whinge go to venting and unload if you go to the general discussion page go down five topics and read the letter all pain sufferers need in their pockets.

Cheers
Johnno

as long as I wake up alive I'm happy
Because it could be worse

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