Confused and terrified about what to do
I recently moved to Australia (NSW) from overseas. Back home, I was involved in a terrible car accident that crushed my body. This resulted in chronic pain that left me completely unable to function. For the last 10 years, I have been trialled on just about every medicine under the sun as my pain specialists gradually worked out a good combination of medicine for me. Through trial and error, they ultimately found a pretty good combination that included opioids for general maintenance, as well as ones for bad days and injections for pain emergencies.
Anyway, I've now moved to Australia. I brought with me all my scans, prescriptions and information from my old doctors. But all the pain specialists I've seen here say that they won't prescribe any of my medicines! In fact, the three pain clinics I've tried so far all say that they don't prescribe any opioids at all - not morphine, oxycodone, pethidine, hydromorphone, buprenorphine or even fentanyl patches! None! This is strange because all of those are legal in Australia and I know people get prescribed them (I've seen them mentioned on various Australian forums).
Each doctor has given the same rationale. They say opioid medications don't work for chronic pain, and that after a while these medicines actually cause the pain (??). They said that they will replace all of my pain medication with treatments like physiotherapy, hypnotherapy, counseling and massage. I'm completely terrified of what will happen when the meds I brought with me run out. Can those things seriously replace actual medicine?
This is made worse by the fact that my doctors back home expressed very critical views of this type of attitude. My old doctor's views were that opioid painkillers do indeed work (obviously). He said that the only reason some doctors have stopped prescribing them is because they are scared of legal liability if someone goes and overdoses. Prescribing opioids is also apparently a bother of red-tape and paperwork for them. The general stigmatization of those pain medicines in the media is also a factor, because doctors don't want people to think of them as a dealer of 'scary' medicines. In his view, when doctors won't prescribe opioids it is for those reasons - and has nothing to do with the actual efficacy of the medicine or the wellbeing of the patient.
Back home, I attended pain meetings and knew some people who had this happen to them. All of them ended up in MUCH worse pain after their medications were stopped, and stated that the 'replacement' therapies did little (if anything) to help. At least two people in my old pain society committed suicide after this, unfortunately.
I was lucky enough to not have a doctor like that back home. Things were looking good, and I moved to Australia thinking things would be even better. But instead I am experiencing that nightmare for myself, first-hand, and I am absolutely terrified. I came to visit here a while ago (to scout out Australia as a place to live), I saw a pain doctor and they said it would be all OK! No worries, they said! So I went to all the trouble of moving here (spending all my life savings), and now that doctor went back on their word! :pinch: And all the others seem to be like that too!
So now I'm stuck here. I have Australian residency, but not much money left. I can't afford to move back home. My intention was to get a job shortly after arrival, but without my medication I will be bedridden, screaming and unable to work. Most terrifying is that the medicine I brought with me is soon going to run out. And the doctors here in Sydney are not going to replace it when that happens. I'm so dead. 🙁
Does anyone know where I can go, or what I can do? 🙁
Are these pain specialist you seeing private or through the public health system?
There has been conflicting surveys done into opioid use and chronic pain, I too suffer from drug inter reactions and the only drug my system tolerates is one opiate pain med, recently they have tried to change me over, with the same reasoning in regards to opiates and an increase in pain, this failed miserably, I ended up in more pain and severe side effects, so I was put back onto my opiate medication, my pain levels went back to what they were.
I go through a public pain clinic at our main public hospital, in fact in our state it is the only one, the most common drug they now try to get pain sufferers to take is methadone, if anticonvulsants don't work, drugs like gabapentin or lyrica.
I would try getting a referral to a public pain clinic, take all your previous medical history with you, I can't believe they would just cut you off, seeing you have covering letters and all your scans and notes from your previous pain specialists, it only takes a phone call to confirm you are sincere in your request for ongoing care
Recently there has been a lot of bad press over opiate abuse, unfortunately chronic pain patients are the group who are suffering because of it.
Thanks for your kind words. I have tried 3 different private clinics. This was very expensive, but it was my only option because the waiting list for the public clinics was too long (it is now only a matter of weeks before my medicine runs out). I needed to try and find a solution fast, but instead all I did was lose a lot of money.
I can only tolerate a couple of opioids as well (e.g. morphine). Medicines like Oxycodone/contin and (especially) methadone made me very sick. I think I tried all of the legal opioids back home, because last year they told me there were none left to try. 🙂 I've tried Lyrica as well, but it didn't have any pain-reducing effect for me.
I have a supportive GP here in Australia, at least. Next time I see her, I will get a referral to a public pain clinic. However, she indicated that it would probably take me at least a few months to get into one. But my medicine stocks won't last anywhere near that long. So I don't know what I will do in between now and then. Very scary. 🙁
Yes it is surprising that my documentation from overseas wasn't of any value to them. I not only showed them the letters from my old doctor explaining my current medication, I also showed them the prescriptions and actual pill bottles with my name on them. My new (Australian) GP even confirmed the details with my doctor overseas and indicated this in her referral letter. Didn't seem to mean anything to the pain specialists...
If all else fails and it is getting close to having no medication, you could try going to the ER department where you are on the waiting list when you are in pain, explain your situation, they may get you in sooner and give you your meds until you can get in.
There has been a lot of stories about private clinics who take the approach of getting patients off medication, by use of physio and exercise, for a lot of CPer's this approach doesn't work, and some have been found to be shonks in it for the money, as I said I went through the public system and still do, and agree the waiting time is a bummer, but I also had a very caring GP who sorted my meds until I got in, then the drug trials started, they were not fun, seeing my body rejected just about everything they threw at me, I do tolerate Kapanol, and I do take Endone for bad days when I can't control through techniques taught at the pain management course, this was also through the public pain clinic, not private, the course was not designed to get you off your meds like the ones you have been to, they worked hand in hand, it is designed around the ADAPT and STEP programs and well worth doing, the tools they teach you to cope and manage chronic pain a very worthwhile to do.
Hang in there I doubt they will leave you to go cold turkey, don't let them push you around, it is your right to proper medical treatment and pain control.
Hello and welcome to Australia Sarah.
I just wanted to welcome you and say how I empathise with you, I too would be terrified. I am horrified at what you have been through with your appointments to see these so called specialists. At the very least, you would have to be weaned off your medication to lessen the side effects, but to go cold turkey is just plain wrong. I am mortified as to your plight.
I know GPs can actually prescribe opiates for a period of three months prior to needing a second opinion to get approval for the health department. That is the reason many of us need a pain specialist for a yearly review and to get the approval for another 12 months. No pain specialist has been able to help me other than giving me approval for my continued opiate requirements.
Grappers advice of going to emergency at a large hospital would be your only choice if you are left with nothing for pain relief, hopefully you would be well taken care of.
I wish you the very best of good luck Sarah. It would be great if you can let us all know how you fare.
Take care 🙂