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

  • myalgic1
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11 months 2 weeks ago #27911 by myalgic1
myalgic1 replied the topic: Am I right in being suspicious of, 'pain specialists'?
Totally agree with the twenty five percent business...it seems a bit suss to me that so many find relief with low dose opiates, yet many in the medical profession appear to be hell bent on forcing as many people off them as possible.

It didn't surprise me at all, that the notes he received from my GP were lacking info. Not the first time it's happened and not with her alone. She'd not altered my drug list to reflect what I am currently taking, either. Learned early on, to correct the list while at the specialist's.

I put it down to patient over - load at the practice, as they are one of the few bulk billing surgeries in the area; you often need to book an appointment at least four days in advance and even then, you may miss out sometimes. Regional Australia is suffering badly despite what the pollies say.
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11 months 2 weeks ago #27912 by Peter
Peter replied the topic: Am I right in being suspicious of, 'pain specialists'?
Oh I know what it's like in regional Aust. It takes me a couple to a few weeks to get in to see my doctor. I just had to make an appt today to see my doc and it isn't until the 18th of Sept. Plus I have to travel 50 k's to get there.

Anyway, let's hope your troubles will be eased for now and you don't have to argue with any docs for a while.


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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10 months 3 weeks ago #27977 by Pitto
Pitto replied the topic: Am I right in being suspicious of, 'pain specialists'?
WOW WOW WOW!!! first off why has it taken me soon long to start to research more into my pain, 2nd I'm just curious, does any of this information go back to the government ?

I damaged my right wrist back in 2012 with one punch, trying to get fit doing boxercise. The pain was a slow onset that just got worse with time. I finally saw a specialist a year later and was told then I would have a cortisone shot if that didn't work I'd need surgery. The shot was complete agony so I avoided going back in case I was told that I was too try one more shot. I'm on the Central Coast of NSW, my neighbor who also said she saw the same Dr said he had retired and if I needed to see someone I'd have to go either to Syd or Newcastle, which stopped me again from seeking help.
So it got to the point I needed help as it had become chronic, I had surgery May 2016, Ulnar Shortening Osteotomy, prior to that I was taking endone for pain relief.
Post surgery i'm still taking endone 1 or 2 for breakaway and Targin 15mg x2 daily.
Over the year my own GP, said she wanted me to cut back and tried my on Lyrica, I had taken that for back pain which worked cause its nerve back pain. Did nothing for my wrist/arm.
Then she tried me on Endep for sleep and pain, it worked fantastic at knocking me out, I started that in Sep 16, I spoke to my GP about gaining weight and how it didn't make sense that I just had 4 months off recovery and returned to work in Sep 16 (I'm a gardener so very labor intensive) and managed to gain 10 kg. If I took it at night, I drive a truck for work and start at 6am, I was way too groggy till 9am/11am, so I started taking it as soon as I got home say 4pm, then I was knocked out early and only slightly groggy in the morning. BUT I had this all time brain FOG! I was having problems at work prior to surgery and when I returned things were worse and when I found out Endep is a antidepressant I thought it was helping me there, IT WASN'T it made me a hole lot worse.
I got to the lowest of lows and after multi life things getting to me all at once I snapped!
I haven't taken a single Endep since and my life has improved and I'm almost back to full strength and that ALMIGHTY FOG has gone!

Now off to the GP after my lowest of lows and of course I knew my GP would have been informed from the hospital, I told my GP straight off I knew it was the Endep that screwed my head up!
PAIN CLINIC PAIN CLINIC you need to go see the pain clinic!!!!!
I went in good faith, the lady was lovely, very informative, I gave her all the information as I knew she was going to have access to my records anyhow!
She asked a million questions as you know, the problem with my injury it just hurts and aches and throbs, I still have complete range of motion.
The same thing has happened the whole way through, my GP, first specialist, hand physio, 2nd hand specialist, 2nd hand physio and now the pain clinic. They all touch me and prod me and flex me and check my motion range and ask if anything hurts and I only have minute pain with what they do. The day after I've seen them I'm in agony, after all the prodding.
So this was my pain clinics options to me on the day, I see my GP on Thursday the report wasn't there yet last fortnight.

The pain clinic DR wants to put me onto Naraspon patch 20 mg I think, which she discribbed to me as a huge patch just shy of a half a A4 piece of paper. This patch stays on for 7 days. It is still an opiod base but works in two ways. You can't OD on it and she said when I put it on for the first time I'm only allowed 1 more Targin. BUT IT DOESN"T TAKE EFFECT FOR 3 DAYS so you will most likely have withdrawals for a couple of days till it starts to work. ( SO WHY ONLY ONE MORE TARGIN?)
I then went on to explain to her the work that I do, that I work outside and that its now coming into spring/summer and that I'm usually covered in dirt and crap everyday and I sweat & this is the first summer I'm having it forced onto me that I need to wear long sleeves and a long shirt. I shared my concerns that the patch might not stay on for 7 days and who in their right mind is going to feel clean and comfortable wearing that all dirty and sweaty! She didn't care!!!! JUST TRY IT!
How long will I be on this then, ohhh a year or more till we start to cut you down, she asked if I was married etc for the roll it can play as a sexual deterrent. I didn't click on the day, yes i'm single now, you think me picking up and having to explain to someone what it is and why I wear it will be worse for me than, taking a couple of pills on the side.
But her main reasoning with me is , it takes off you the whole taking pills everyday! THOUGH YOU CAN STILL TAKE YOUR ENDONE!!!

PLEASE SOMEONE EXPLAIN THAT TOO ME!
If anyone has used them and can give me feed back? On what they do for work and if it will stay on.

I feel let down, and because a medication they prescribed to me screwed my head up, that I'm getting the same response AUSTRALIA is in a huge opiate epidemic, so what??? I'm in pain!!!!
You just might have to change JOBS!! tell me at 36 years and single how am I going to afford to retrain and start from the bottom when I can still do everything in a labor intensive job (in pain) with pain relief...

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9 months 4 weeks ago #28031 by Deancon76
Deancon76 replied the topic: Am I right in being suspicious of, 'pain specialists'?
Not really. Some have different approaches. Like you I suspect bieng in persistant high levels of pain has worn me down. This is an effect of long term pain on the brain. It is normal to be more anxious, more wound up (fight versus flight) but we cant run.

Controlling this primitive human response to pain is in itself a struggle. There is pain that heals, and pain that stays and even gets worse. Generally if you have an injury and it is not resolved to a managable level in 5-6 years likely it will be problematic forever. And may even degenerate (particularliy spine). Many times I have been thinking I am unable to cope any more than something gets worse or changes).

(I have in fact had a go at everything.LOL injured 2000 unrecovered, now degenerative.DDD and Modic type 1 changes Lumbar. l4/5 s1 torn pushing on nerve roots, T7 wedge 34%. Arthritic facets throughout.c4/5 bulge c3/4 bulge.WICKED MIGRAINS (My Back is Funked and it HURTS 24/7 no rest from Modic 1 bone pain. all the rest a bonus on top.!!lol

SERIOUSLY though continued long term OXY or Targin ect (morphiene like dirivitives) will cause severe depression and dependance at some level. Is it manageable, ask yourself is it working and WILL IT STILL WORK in the future. I end up SICK now if I have ANY like endone, oxy ect. My body is refusing it. Sure still takes edge of pain but the side effects are now unmanagable. i found no was the answer to the last Q. I realised my degenerative condition is worsening and I must now AVOID 1st gen Opiods like oxy/targin ect because I know when things get worse latter on I want them to work. They do not work if you use long term. Long term use effects the bodies own Endocannabaniod system leaving you with essentially a completely non functioning (Bodys own )pain relief but can even worse create a situation where your body fights off the opiates leaving them non effective and making us in worse still pain. (the body having attacked introduced opiates as well as the bodies own.....( This effect is documented and the main reason they wish us to reduce or stop taking opiates especially long term use.)
How do I know this to be true and not an "invention" because it happend to me.
And I would not wish it on anyone else. When your system rejects opiods it is INTENSLY horrible experience. Powerfull anxiety, debilitating depression, headaches/migrains and that horrible sick from morphiene feeling. I only just survived with the help of physcologist and counsellor and a very understanding GP . It was the most brutal horrid event of my life. ( it took me months to work out I was rejecting the Opiates and this was compounded by Lyrica 150mg bdx. I was indeed suicidal, angry, sick and thats on top of the normal amount of those things I live with from severe Pain 24/7.
I tried everything I use PalexiaSR at minimal dosage of 100mg bdx becuase I have found less side effects with only a slight reduction of effectiveness on Targin/Oxycontin. ,. It is the least evil of my previous Lyrica 300mg/Palexia combo (suicidal), TarginSR 20mg/10 bdx, Oxycontin 60mg bdx and back when I first injured my back oxycontin 100mg bdx. I also have tried many supplements, creams, anti-inflamatories, and of course anti-depressants and antiaxioltics and anti-epileptics. None of which work very much and do not justify side effects. NONE.
Tapentadol or Palexia(tm) seem to be not to bad on side effects and do take the edge off the pain. They do not work if I stir up the pain (like any exersize does) Tapentadol has very little effect on fresh acute episodes. Equal to panadol in that regard. But it does take edge off 35% the deep bone pain and throbbing ache of bone origin. It has little effect on discogenic pain 20% reduction.
Overall it is not as effective at SHORT TERM pain relief as oxy AT ALL. also 250mg is minimum doseage of Palexia for clinically relevant results. upto 600mg daily max. 200mg Palexia = 20mg Oxy ( very roughly).
Tapentadol essentially bieng a fourway isomer meaning it is a twin stereo image of Tramadol.(again crude comparison sorry) I know the relief is 50/50 but I know from my experience it may be the only long term use painkiller that wont end us in the end.... Hope my story gives you some hope and I now refuse oxy/targin/endone if I end up in hospital these days I take my Palexia with me so they dont give me Endone. ALWAYS DISCUSS MEDICATIONS WITH A PHARMACIST. they will give you the low down on everything. :) chin up you me and everybody :)
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9 months 3 weeks ago #28035 by myalgic1
myalgic1 replied the topic: Am I right in being suspicious of, 'pain specialists'?
Hi, Pitto..
So sorry to read your of your struggle. I was a signwirter and had to stop because of increasing and enduring pain. When it all kicked off, I was around twenty five and a busy full time working single mum to my beautiful girl. Initially, I was given panadeine forte, which worked quite well for a year or so, but then the business I subbed to landed a big contract for a mulit national development company on the Gold Coast and I was expected to work ten and twelve hour days so that my boss could get his money. He said that he needed me to continue working for him, but that if I took any time off, I would be finished as a subbie. I persuaded my doc to give me strong anit inflammatory meds, along with the panadeine forte and ended up stripping my stomach lining, which was an extremly painful experience and by the time I had recovered, I'd lost my job. S'alright. I went out on my own, doing the jobs I wanted to and managed to keep a roof over our heads, but the pain was getting worse and worse. From panadeine forte, I was put on tramadol 50mg and again for a few years, I was fine...in pain but able to work. I had several MRI's, and CT scans during these years, and they worked out that I had suffered a nasty neck injury as a result of domestic violence,(being slammed face first into a brick wall will do that, apparently), that I had disc bulges from c3 to c7, that I had degenerative disc disease in my early thirties, as well early onset osteo arthrits in my spine, pelvis and knees. Predictably, the tramadol stopped working, so I was given epilim and endep as well panadol osteo to see if that worked. Nope. After struggling on, working less and less because of debilitating pain, I was finally put on 30mg of oxycontin twice a day, with 150mg of endep to be taken at night. This really worked for me and I was able to go back to working full time sign writing...which is not an easy job, by any stretch. From one day to the next, you could be up in a cherry picker, writing a billboard, to installs, to uninstalls, to lumping 3600mm sheets of weathertex around with no help, to digging post holes and pouring concrete, to sitting for hours at the computer , working on a client designs. Loved every minute and dearly wish I could go back to it, but there's no hope of that. I was on that medication regime for a good ten years altogether, but during that I developed even more problems with my body such as early onset osteoperosis, spondylosis and recently discovered that I also have scoliosis. Everythign went to shit when we moved to a new region. I was treated as if I was a junkie, was accused of doctor shopping and of lying about the pain, by four doctors, before I finally found one that had experience with persistent pain. She recognised that the oxy dose was no longer working, so she helped me do a small detox and now I'm back on oxy at 15mg twice a day and endep 50mg at night. I can't say that I feel fantastic, but I feel a hell of a lot better than I did this time last year, when I was put on that bloody awful lyrica, (did my head in, turned me into a zombie who could barely string a sentence together), and I am slowly getting me life back on track.

At the end of the day, having had over twenty years experience with persistent pain, by all means listen to other peoples' stories, but don't ever feel that you are wrong in taking this med or that med. Everybody reacts differently to different drugs. Many espouse the use of pot as a fantastic way to manage chronic pain, but for me, it makes me paranoid and makes me even more aware of my pain and suffer more it. I fucntion extremely well on low dose oxy and low dose endep, but others may not. Sadly, you are at the beggining of a long journey to discover which meds work best for you and the only way that this can be discovered is by trial and error. Develop a good relationship with your GP, ask her to refer you a multidisciplinary allied health team. They will be able to point you in the right direction re physio, exercise, CBT, mindufllness, diet, drinking habits etc, as all of these play an important part in your pain management regime.

I wish you all the very best of luck and remember that all of us at Chronic Pain Australia are here to listen or lend a shoulder should you need it. BTW, there isn't an opioid epidemic in Australia. It is the merely the scaremongering tactics used by pro pain interests shouting so loudly they're drowning out those who speak common sense. The real drug issue in this country is alcohol abuse.

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7 months 1 week ago #28230 by Marvinstorm
Marvinstorm replied the topic: Am I right in being suspicious of, 'pain specialists'?
You have every right to be suspicious of a pain specialist. There is no such thing. Anaesthetists adding a string to their bow in many cases.

If some people think that this person can solve all their CP problems fine - I have yet to meet one.
If you have ben around the block a few times you will know that opioids are not an epidemic and you don't have to have cancer to be eligible. All "specialists" come from the same school - eliminate opioids. Yet from the posts here they are the only thing that works for many. If Palaxia works good but for many it dosent.

Our culture teaches us to revere medicos. I respect them as I respect any other professional. But I have never found another professional that makes their own rules up as they go except car salesmen and financial planners (who need a dose of their own quantative easing). Pulling the "I know best"card.

If you are up for a draconian experience that may affect your current comfort level by all means go to a pain clinic or specialist. If your GP dotes on their advice 100% he will follow through and you may have a rough time.

If on the other hand you are managing after many ops/years but are paranoid because of the media opioid beat up think twice. This is my contribution.

Nobody has a monopoly on suffering/what you deserve. It is irrelevant as to why.

I've been through one "clinic" in NSW and it was diabolical. Professionals who don't front, dim receptionists who get times wrong. Who needs this?

After my last fusion I was coming out backwards having been sent to rehab too soon. Hips done this way we're fine. In a vulnerable moment I asked what I could do next and the inexperienced 20 something doctor muttered "pain clinic".

Kerching! Enough. Even after being spat out of the spin dryer I'm already being sucked back in without space to breathe.
It's not conspiracy theory. It's an invite to brace yourself to exposure and losing confidence in yourself.

Do it once and I hope it helps. But if you feel you are reasonably steady on oxycodone or whatever and are a long time CP sufferer be very objective. This may be as good as it gets. Accept bad days, have a goal to reduce meds if you can by tapering off but the chances are you will need some dose.

And ignore the doomsday lot in the media and medical professions. I say this as a 17 year veteran. It is hard enough to find stability sometimes, you don't need a demolition job and the zealots in meds reduction can wreak havoc.

It takes guts but be happy if you are basically ok. We all suffer - except those treating us with rare exceptions.

I'm blunt and to the point.

Best of luck

Nick

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