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Am I right in being suspicious of, 'pain specialists'?

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9 months 3 weeks ago #27818 by myalgic1
myalgic1 created the topic: Am I right in being suspicious of, 'pain specialists'?
Hello, everyone...

I am really hoping that someone here can help me. I've lived with chronic, severe disabling pain for over twenty years and to this point, have tried EVERY method of control and management that QLD HEALTH has instructed me to use. For most of those twenty years, I worked full time, in a very physically demanding job as well being a single mother to my beautiful daughter. I have a number of conditions, each exacerbating the other, but at the moment my biggest issue - pain wise, is fibromyalgia and early onset osteoarthritis in my spine and pelvis..oh, and plantar fasciaitis, which is taking a HELL of a long time to heal, (my Achilles Heel, one could say..groan). I was coping well until I had to move, seven years ago, from a rural setting in the Gold Coast Hinterland, to a semi rural setting further north. After having managed my pain successfully for fifteen years with my wonderful GP, it came as a severe shock to me that I was treated as if I was an addict by the medical profession in my new location. For the first time in my life, I was accused of doctor shopping by nervous, 'newbie', GPs, who really didn't want another opioid chomper on their books, (It wouldn't look good, would it), until after five failed attempts at getting hold of a doc who would treat me, I found one who would....but only if I agreed to attend a pain clinic. Well, I was over a barrel. I needed ongoing medical care and this was the ONLY way I could get it. The pain clinic was an absolute farce, run by a narcissistic charlatan, who had no idea whatsoever how to treat chronic, non cancer pain or indeed, how to tell addicts apart from those dependent on opiates in order to enjoy the basic quality of life that is the right of every human on the planet. This, ahem, 'gentleman', waited until he had a group of ten sufferers, ranging from people who needed to be taken off the goodies because their rehabilitation after surgery was successful and those who relied on opioid medication for the aforementioned reason. He then bulk billed Medicare two hundred dollars per person...that's two grand for a morning's 'work', at the tax payers expense, (and they say the disabled are the ones draining the sysytem - HAH), under the guise of giving us all, 'methods', to use instead of drugs (which he most certainly did not), to control our pain. His only goal was to get as many people off oxycontin and it's cousins as quickly as possible, without giving a damn as to whether we needed to come off the drug or not. It is my personal belief, unsupported by any evidence that I can get my hands on however, that this gentleman was offered an,'incentive', to get as many people off oxycontin as possible, as quickly as possible, because it had recently been made public that the cost of supplying the drug on the PBS had blown out to astronomical proportions, in large part, due to our ageing population and our wonderful government was scrabbling for pennies.

I am doing fantastically well now, all things considered but I tell you what, I was forced to live in Hell on Earth for four years and nearly lost my relationship with my daughter because she couldn't understand that it was the useless meds I had been put on, that made me acutely anxious...to the point I refused to open letters, answer the phone, reply to an email or venture out for any form of social activity, that made me gain nearly ten kilos in weight, that made me lethargic, to the extent that I would get up and go straight to the sofa and fall asleep for the rest of the day, to be awake for only a few hours at night...to being suicidal. I knew this wasn't, 'me'. She knew this wasn't, 'me', and she urged me to research the drugs I was on. I found the culprit and stopped taking it...gradually, of course because to do otherwise is to invite a whole heap of trouble upon your head and as I write tonight, I can happily say that in the six months it's been since I stopped the offending mixture, I have completed a two year creative writing course in five months, receiving four high distinctions and a credit, I have started attending a beading class and am back creating artistic wire and bead sculpture, I am walking again, writing again, gardening again and swimming again. And my meds now? Thirty milligrams of oxycontin a day, endone for the occasional break through, due to having to drive for long distances and Endep, for depression and sleep. As you can see, I am functioning well with my current regime and I am very happy...

Tonight, though, that changed. I opened my mail and found to my horror and fury, that I am to attend a pain clinic at Royal W omens Hospital, Brisbane on the fifteenth of this month, to,'assess', my pain management. There is nothing wrong with my pain management now. I am happy. I am a contributing member of society. I walk four kilometers every day. I practice yoga every morning. I eat lots of veg and just a little meat. I do my exercises. I do hydrotherapy once a week in Winter and as it warms, I shall be back to hydrotherapy every day in my pool. See? I don't need to do a five hour round car trip, which WILL be painful for me, as long distance driving is...all because my GP doesn't have the balls to stand up to the Chief Registrar and say, "My patient is managing her pain well. She does everything I tell her to. Her current medication regime works really well for her". And why doesn't my GP have the balls? Because of this awful hysteria within medical and media circles over the big, bad, 'opioid epidemic', they themselves created back in the day. So, I now have to drag myself to Brisbane to see a so called, 'pain specialist', (there is no such thing, just an orthopod or anesthetist taking a break from their day job), in order that my GP continues to feel secure in her job. It's okay for her. She'll have her job and her health to keep her going, but if these medico in Brisbane want to, they can destroy my quality of life with a simple stroke of their pen and I won't have any way in which to argue my case.

Unsurprisingly, If you are still reading this, to say I am anxious about this impending visit is an understatement. I feel very threatened and scared that my life will once more become one filled with under treated pain, brain numbing lethargy, hours of witless of daytime television and suicidal thoughts. When my pains is controlled and managed, as it is these days, I am fine. When people start mucking about with my regime and putting me on this and taking me off that, it isn't. How can I tell all this to the person at the clinic and get them to understand that I don't need their help? Please help me, Chronic Pain Australia, your help I do need, else I fear they will mark me as being troublesome and non compliant, when I try to get them to see things from my side. They have to deal with people in pain every day, and their judgement becomes clouded when it comes to deciding who needs help with their pain management regime and who doesn't. It's easier to just lump us altogether and treat us the same. Remember the old Seinfeld soup kitchen episode? That's what a pain clinic is like, it seems.."NO MEDS FORRR YOU!!!"

Please help.
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9 months 2 weeks ago #27847 by myalgic1
myalgic1 replied the topic: Am I right in being suspicious of, 'pain specialists'?
more ramblings, I'm afraid...

As I write, I am in a state of profound exhaustion combined with frighteningly high anxiety. I'm tachycardic, with the associated shortness of breath and dizziness. I'm having difficulty sleeping, because intrusive, negative thoughts about my impending loss of quality of life keep me in a state hyper - vigilance. I feel threatened and no longer in control of my future. I feel cheated and betrayed by my doctor, who is only protecting her job because she has to. Normally, I can talk myself down, but ever since I received the letter from Royal Women's, all of my coping strategies have deserted me and I can't get my head around the fact that I may be forced back to that awful dark time , with unending pain, at the whim of a, 'specialist', who has the power to destroy my life...can anyone give me any ideas on how I can get my brain to stop reacting as if I'm under threat? Thanks... :(

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9 months 2 weeks ago #27849 by Peter
Peter replied the topic: Am I right in being suspicious of, 'pain specialists'?
Hi myalgic1

Welcome to the CPA Forum!

Really sorry to hear that you are having such a bad experience with the medical profession.

Because Chronic Pain Australia (CPA) works very closely with clinicians, be they GPs, pain specialist, clinics, allied health professionals, we don't allow anyone to do any doctor bashing here on this forum. And you have not done that. I'm just letting you know that we must be careful not to name doctors or say bad things about them.

HOWEVER!!!!!!

You have raised an issue that is a huge problem in Australia and CPA are working on doing something about this. We hear you and all the others who are suffering from over zealous doctors who are removing pain meds and not replacing them with anything worthwhile to help with pain management.

There are pain clinics and there are pain clinics. Unfortunately, some of them are not very good, which includes the doctors working in them. Now that doesn't mean they are bad, it might just mean they are not fully up to speed with latest best practice.

This pain clinic you have been asked to attend, can you please tell me if you have considered asking to appear via Telehealth, instead of being forced to drive all that way?
Seriously, you should be able to do this, so please do yourself a favour, phone them up and ask.

Unfortunately we here are unable to assist you with this situation at the present. The only thing we can do is give you some tips on how to handle the appointment.

So when you do see the specialist, find out exactly what you are there for. If they say it is just to review your medication, ask them what for. Then tell them you are doing very well on the doses you are currently on. That you are now engaging back into society as fully as you can, considering all the other things wrong with you, and that you have removed the drugs that were causing you other problems.

If they suggest reducing or replacing, ask them why and what are the reasons. Don't be afraid to challenge them and tell them you want a valid and practical answer, not something they have been told to say because they have to get the opioids off of you.

Just one bit of advice that I must give you. Don't go into this appointment with a negative attitude or believing they are going to strip you of your medication. Because it may simply be a review to see if you are doing okay on what you are taking. And if that is the case, then they may just write a letter back to your GP stating as such and your GP will then 'hopefully' carry on prescribing the medication.

Also, you say your GP is not helping because she is just in job protection mode. Well, do yourself a favour and get the pain specialist on side. Because if you do, they will help you with the GP. So be proactive with the specialist. List all the positives you have done to reduce drug intake, plus all the work you have done with study and other things, and that you believe you are now on the best drug regime that you have been on for a long time. All doctors prefer patients who have taken charge of their pain condition and are self managing well. If you are positive about this, then they don't have to worry too much, nor do they have to think too much, because you are doing the thinking for them.

So remember, go ask if you can have the specialist appt via Telehealth, and when you have the appt, be positive and in control. Get the doctor on your side and then speak to her/him about the issues regarding the GP. Ask for their assistance.

I hope it all goes well for you. Please keep us in the loop!


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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9 months 2 weeks ago #27852 by myalgic1
myalgic1 replied the topic: Am I right in being suspicious of, 'pain specialists'?
Hi, Peter...

Thank you so much for your very helpful reply. I honestly don't know why I have lost control over my emotions at this latest attack on my integrity. In the past, I have been able to cope reasonably well with medical reviews, (having had chronic pain for over twenty years, you have to learn SOMETHING), and have been grudgingly willing to accept being treated as a guinea pig for the next, new, 'cure for persistent pain'. I've done the mindspot courses, I use meditation, I use CBT, I've kept pain diaries faithfully and I've been so well trained to believe that those in the medical profession hold authority over me, that I'm better conditioned than Pavlov's dogs. I will ask if I can have my appointment via telehealth, but I've never heard of it. Do I need to have skype or something? I only have fifty gig of download capability and can't afford more...would my surgery allow me to conference from there? That would be good - I could get my gp to attend the appointment, too. I've already told her that since she is the one who is unsure of her treatment of me, that she should be the one attending the appointment, but that went down like a lead balloon, predictably. I also told her that I had no problems whatsoever, with my pain management regime and she conceded that I was much better on the low dose oxy, endone and enpdep, than on anything else she prescribed me. So, the only reason that I can see, (she kept telling me she had obligations, but wouldn't tell me what those obligations were), is that because I've been using opiates for more than eight weeks, she has to report to the chief registrar and provide evidence of why she continues to prescribe opiates to me, (according to the 2017 clinical guidelines for practitioners, QLD Health). Now, if I was chewing up all my tabs within a week of getting them, selling my tabs, mixing them with grog., sharing my tabs or doctor shopping, I would understand why I was being sent to someone who has very little formal training in the mechanics of pain and who treats pain patients as an aside to his real job. I brought this up with my doc and she said that docs train for seven years to become a doc and that they could treat more than one thing. That's fine. But, in order to be a specialist in something, you need to study that topic exclusively for a further seven years to become qualified, which pain, 'specialists', don't do. I trained in graphic design for five years and worked in the industry for over fifteen, but you wouldn't expect me to be able to fix your printer, would you? No. Because I'm a sign writer and illustrator, (or was before becoming too ill to work), not a printer fixer.

I think that maybe, unfortunately, the reason why I'm responding so very negatively to this situation is because of the PTSD and anxiety disorder...but when it gets bad like this, no amount of counselling turns me around. I had such an awful time with the last fella who called himself a pain specialist, that now, the very term makes me see red and want to shine the spotlight via the media, on how poorly chronic pain people are being treated. Rest assured, Peter, I will not violate the terms and conditions of this website by naming names, or clinics, (although I personally believe that there should be a public regsiter naming bad doctors and specialists, just as they put the names of opioid users on a register), but if I am forced, YET AGAIN, to prove that their preferred medications do not work for me and have my quality of life destroyed, again, well then, I think you may see my ugly mug on Four corners. I've simply had enough and I am not going to allow myself to be pushed around and threatened with non compliance again.

Having said all that, I freely admit that I'm terrified and will be meek at the appointment. I will write a list of the questions you've suggested I ask and make the fella go through each response thoroughly, without, hopefully, losing my rag. My relationship with my gp has suffered so badly as a consequence of her sending me, that I could no longer talk to her about it, so instead wrote her a letter outlining my concerns, (I couldn't talk to her without crying), so I may do the same thing for this appointment. No doctor is going to listen to a patient if they are hiccuping their sentences because they are crying too hard to talk rationally. If I cry, it will simply re - enforce the idea that my medication needs changing, when it doesn't.

Thank you,a gain, for replying to me. You have no idea how much you've helped me. Hope I can help someone in turn, one day.
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9 months 2 weeks ago #27853 by Peter
Peter replied the topic: Am I right in being suspicious of, 'pain specialists'?
Myalgic1, there is some place you can go and make a complaint. See here: www.patientopinion.org.au/
If you decide to join up and contact these people, they will contact the doctors and clinics that you have lodged complaints against to see if things can be improved.

Usually with a telehealth appt, you attend your local hospital. But if there isn't one, then maybe the doctors surgery might have a room. You'll need to ask.

I can understand why you feel as you do. I have been on this journey for 57 years. Got my first lot of whiplash injuries at the age of just 3 from a MVA. Primary school years were hell. Constant headaches, neck aches and back aches. Had my first Xrays at the age of 9 that found narrowing of L5/S1, but they didn't do my neck.

In 1985 I got hit in the rear end by a big metro bus that was fully loaded and had no brakes. It was doing between 60 and 70 kph and I was stopped at the lights. More damage to my neck and lower back, then extra damage to thoracic with 2 compression fractures. The scar tissue for the thoracic injuries impinge on the nerves that go into my chest to my heart and lungs. So I constantly suffer pseudo-angina pain and pain that would I guess resemble pleurisy. I feel like my lungs have a thousand needles stabbing them, each time I breathe.

Anyway, I've been to all the allied health professionals, which all failed. Been stabbed by an old Chinese guy, which actually worked, but cost too much and had to give it away. Spent decades just fighting to stay on my feet and working. Then I attended the Fremantle Hospital Pain clinic. Best thing I ever did. Answered all my questions and got me to a space in my head where I no longer worried about my pain. Actually, I didn't worry too much prior to the clinic, but this just cemented my peace of mind. You see, I have not known any time at all in my life without moderate to severe pain. So I just accepted my lot and decided to ignore much more pain and then decided to do whatever I could that was in my ability to do to keep myself busy.

I do take medication, but because I am a fibromyalgia sufferer and have a chemical sensitivity, I can only take low doses of Codeine. Anything stronger and I end up in hospital. I've been on 75mg of Lyrica since 2010, but are at the moment trialing not taking it. So far I have not noticed any change. And if it remains that way, then I will not go back on the Lyrica again.

All I can say to you is that trying to live my life the best way I can, resting in bed most afternoons for an hour and not worrying that I hurt a bit more when I do something physical, has helped me get by.

Since 2010, I have been actively involved with Chronic Pan Australia. I became a Board member and the Secretary in 2011/12 and started administering this forum at around that time also.

Over the past 4 years I studied to become a JP. Now I sit in a signing centre once a month, witnessing documents. I also am on the local Magistrates Court roster and sit in court regularly with other JPs. In WA, country JPs have the same power and authority as a Magistrate. So we do most of the summary cases where someone has pleaded guilty, like traffic and minor criminal. We do restraining orders and bail applications. So it is varied and interesting and it is all volunteer work. No money!

This has kept me plugged in to society mentally and helps me keep that black dog on its leash. I now feel as though I am a productive member of society. I get paid a disability pension, but I work some of that off in court and in the signing centre.

I'm telling you this, because I want you to know that you can live with some pretty bad pain and still live some semblance of a normal life. It will never be what it used to be, but it's better than sitting in a chair waiting to die of old age.

I hope that things go well for you in your appt.


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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9 months 2 weeks ago #27856 by myalgic1
myalgic1 replied the topic: Am I right in being suspicious of, 'pain specialists'?
Thank you, Peter...

you and I have similar medical histories, although I've never been hit by a bus....just a particularly violent ex husband. Ordinarily, I am happy with my lot and do as much as I can to enjoy a decent life. I garden, swim, write, create wire and glass sculpture, walk, attend a beading group, perform yoga every morning to get the old ligaments loosened up, help my partner gather firewood, (I load the ute and he chops the wood...he won't let me near a chainsaw...have no idea why! :D), hunt for geodes and druzys, which I turn into jewelry pieces and help raise my little autistic grand daughter. You're a long time dead, so as much as my conditions and pain levels allow, I fit as much into my days as possible. I'm not usually one to whinge and whine as it gets you nowhere, apart from experiencing the exasperation of those around you and when I am left alone to manage my pain with the tools that I have , (low dose meds, meditation, cbt , exercise), I am perfectly fine. I can handle quite high levels of pain and only very rarely do I reach for the endone, as I am scared stiff of becoming dependent on that as well the oxy. My mother died young of MS and ovarian cancer...she was thirty two, so I am perpetually grateful that I have so far, outlasted her, (although that bloody black dog is always circling my yard - that's where the psych comes in...he's awesome).

I am in awe of your volunteer work...what a fantastic choice. It must be very interesting. I'm not sure I could do it, as I hold a very dim view of law breakers and violent offenders...if I had my way, every crim would suffer the the full weight of the law for their offences. Prior to moving here, I managed a charity shop for five years, but sadly, while I enjoyed the work, my faith in human nature suffered a big hit. People can be selfish and cruel.

At this point, I would again like to thank you for your kind responses to my hysteria, (I know I'm over reacting, but am finding it very difficult to turn down the reaction dial), not to mention you patience with me. I guess what is really bothering me is that I've not long, (about six - seven months), completed a detox of sorts, with the aid of my gp and reduced from sixty a day of oxy, to thirty and the long months on tapendatol gave me very little pain relief and forced me to spend my days in bed. Just don't want to have to do that again for a while. Of course, when the oxy stops working again, it'll be back on the tapendatol for a while, until I can take oxy again as it truly is the only med that works for me.

Right. I shall stop banging on about this now. It has been extremely helpful to talk to you, you being another pain person who has lived with it for a very long time and I applaud your drive and determination. Hope that one day, I can be as strong as you.

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