Jass' Questions!

Thanks I'll try the hospital again...I didn't know there was patches, I was only offered pills. Haven't been offered much help by either GP I've seen here so far, just more medication.

Hi Jass,

Welcome to the CPA Forum!

I am a bit confused as to why everything is so expensive for you if you are on the DSP. Are there no public hospitals in your area? Are you in a small country town?
Not being Victorian, I don't know how big your area is. I'm on the DSP and I don't pay for MRI or CT scans. If I want Physio, then I have to pay, unless I use my care plan visits.

What you need to do is ask your GP to refer you to the nearest public hospital that is running a multidisciplinary pain clinic. And I think these are all covered by Medicare. Not only that, they are running best practice medicine for people who suffer constant ongoing chronic pain. You'll have to do some work while you attend, which means you are going to have accept that one of the only ways you will improve is through exercise and mobility. They will help you with this.
When you leave, you will have to keep it up, or face going back to where you are now.

You will get to see a pain specialist, a physio and a clinical psych. These people are fully trained on the latest therapies and medicines.

Most of us have been on the drug roundabout and many of us have suffered terribly. Strong drugs like Tramadol can seriously affect you if you are sensitive to strong pain killers, so just ask for a lower dose to start with and learn to tolerate some pain.

Two of the reasons why your pain is so bad, is fear and also your struggle to find a cure. You need to shed all fear from your mind and also stop looking for a cure. There is no cure!
The fact is once you have injured yourself, there is only dealing with the localised injury. It is not a disease. And it can't be cured!

With the right kind of exercise and therapy, you may very well be able to prevent anymore injury and you may get rid of all your pain, thus bringing you back to a normal life again. But that isn't a cure, because the next time you do something stupid or have an accident of some sort, could send you right back to where you are. So the best option is to learn how to live with these problems, how to keep yourself strong, how to prevent future flare ups and incidents, plus how to NOT be fearful of causing more pain.
Pain is not your enemy. Pain DOES NOT mean you are hurting yourself more. There are other reasons why you have pain, and you will learn about this at the pain clinic.
Here's a post I did about this topic yesterday. It explains it a bit better: https://www.chronicpainaustralia.org.au/index.php/forum/general-discussions/12564-introduce-yourself-here?start=1548
Just scroll down until you find my post.

The sports physio will be one of the best options for you, because strengthening, exercise and mobility WILL BE you future and will be what changes your life. So do all you can to go down that pathway if possible.

Why you are being charged all that money for an MRI and you being a pensioner, is beyond me. You should not have to pay, because it should be covered under Medicare. Try asking the GP for more information and for a place where they do not charge this money.

If you want to look for a pain clinic in your area, then look at this page. Scroll down until you find tabs with each state on them, then click on the Vic tab and then look through the list for one near you: https://www.apsoc.org.au/facility-directory
I would suggest you also phone/email the Aust Pain Society too, to see if they can advise you of any specialist in your area.

Outside of that Jass, there isn't really much else we can do to help you. Just remember, the longer you stay in bed, the worse you will get. I have been like you for 56 years and yes, it has been a very long road, but I only got to the bottom of the barrel once. And that period saw me in bed for about 20 hours a day, everyday for nearly 3 years. I went to one of those pain clinics and my life was turned around. I got the psych Monkey off of my back and I am now much better, even though I still have all the bloody pain I have always had. It never goes away, but you can change the way you perceive it and how you handle it. THAT is what you learn in the pain clinics.

Please keep talking, but go read as much as you can on our site, so you can learn more about your pain condition. But please cut yourself some slack and drop off some of the anxiety. I know how hard it is to do that. I am in no way belittling your pain, because your pain is exactly the same as mine and everyone else's. It bloody well hurts and brings all of us to tears on a regular basis. Not only that, depression is knocking at all our doors all the time and we fight to keep it away. So don't feel alone or isolated, because you have a bunch of ready made buddies here who fully understand what you are going through.

Keep in touch!

Peter

country dave, forgot to say - good luck with your surgery, what are you having done?

Thank you Peter... I'm in country Victoria about 2 hours out of Melbourne. I also can't understand why being on the DSP I don't have access free or reduced fees. MRI for lower backs is not covered by Medicare. The closest hospital that has a pain clinic is Dandenong which is 1 and half hours drive away. The sessions they have there are run twice a week starting at 8:30 in the morning for some compulsory course that you have to do before they even let you see any of the specialists, then it's a weekly half day for 8 weeks. I'm failing to see how learning about pain is going to help me deal with said pain. I'm not a dr I don't need to know how pain works, I just want to fix it! I'm hesitant to go down that road, because I've had my physio sessions and all they did was give me four exercises to do in the morning and at night. I am not keen on having to see psychologist because of the damage done by the last 4 I have seen, I already have existing mental health issues which is why I am on DSP in the first place.

I can't get a care plan for the free sessions until next month, I've already made an appointment with an Osteopath for a few days after. I still have to pay the Osteopath $79, and I get $50 back from Medicare, so it's cheaper but not free. Ongoing treatment will cost me $69 a session which is not covered at all by medicare after I use those 5 sessions. The local hospital has a pain management clinic but it is not free, every specialist that comes there twice a month charges fees of $225 to $320 for initial consult, ongoing is just as expensive at $125-$220 a session. They do have hydrotherapy for seniors which I have asked about but not gotten a response as yet.

So there is no surgery or anything to fix a bulged disc? I can't pick up anything that weighs more than 2kg, everything causes pain. I actually have a very high tolerance to pain so a lot of the time I try to mentally ignore the pain and just go on as usual. But after days of doing this I become worn out mentally and physically and can't keep it up. Who can give cortisone injections, surely this would be a better option? The DR offered but then just referred me to a sports injury specialist....which that in itself makes no sense to me..I haven't injured myself I don't play sports. This is purely degenerative...none of it makes sense. I'm just left feeling pretty low and wondering how I can live like this...it's destroying my life, my relationship, my family, and my future...how can I work when I can't lift, sit, or stand for long periods?

It feels like I'm just being palmed off by Drs rather than helped, and it was the same back in Melbourne all my issues were ignored I was given no alternative ways to treat the problem or the pain, just handed a prescription and told to deal with it. I'm really frustrated, I'm depressed and feeling pretty much on the edge. I've been prescribed Endep, which is doing nothing for my mental state or the nerve pain. I think I'll go back today and get the script of tramadol, and just accept this is what life is now.

Hi i live on the border i live on a DSP and get bulk billed at my GP every 2 weeks ,I evan sent to a Drug rehab clinic in Melbourne spend two days there under there treatment GP,s Shrinks the full medical field of medical people after the 2 days they sent me to the Austen Hospital Spinel unit telling the Hospital this man dose not belong here he is in real Pain i had Spinal Surgery then flew me back home and they sent me to the Cronic Pain Clinic for a Live in for 2 weeks and found all the times i went to the A,Emerg Dept with Pain i was treated a total differant by there cronic Pain unit i was no longer a drug seeking person as most Dr,s bury there mistakes i have had many spinal Opps by a Dr that was Banned by all 3 of our Hospitals ,Now i see my Cronic Pain Clinic Dr every year for a reveure and he sends a letter to my GP to say stay on the course for the next 12 months and that keep Australian Dr Deptartment to stay on my Meds i never pay for any treatment i pay for each script untill i get to $550 a year then all is Free i fould 2 doctors who know me and trust me while on these Med,s as there a sequed 8 Narcotic i have been on these for about 20 years i have my good an Bad days but try and keep my Mind Busy riding my motor bike doing charity work when we can the best thing is to keep your Mind Busy all the best an Chin up Ok ?
I also lost my only girl friend i had i married my sweetheart and she gave me 4 beutifull children our first Daughter died only after 10 minutes of life then she gave me a Son then4 years later another Son i spoke to her i would love a Daughter so did she so we kept living trying to buy a home then she gave me a Beautifull Daughter i flet our family was complete so we can grow old all together but it was not to happen i would not let her work im old fashioned she looked after the home we where folding the washing and was putting mu cloths away it took her a long time so i went looking for her she had a Fit in our bedroom and Vomited it came up and went back down into her lungs i got her Heart going again till the Ambo came they put her on Life support they did a Catscan on Sat while she was in ICU the results came back she was Brain Dead we called her Cath paster in and i turned the machine off at 1pm sunday she took 2 breaths her lips went purple and then her signs flat lined at the age of 41 1st Aug 1993 we where both the same age it really messed with my head it took many days of councilling plus medication things where good the Dad with 2 son,s an one Daughter one night my youngest Son asked if he could go out as he has done many times but at 10Pm i felt sick i put it down to bad food then Police knocked on my front door at 5am i was cranky some one knocking on my door at that time i turned the front light on i saw the Police uniform through the stranied glass my Heart fell to the floor they asked me are you Mr ........................................... Do you have a Son called M ...........can we meet at the hospital at 10am to ID the person it was my Son and the time i felt sick was the time he passed away 10Pm i have had about 15 Major opperations over the years and never ever dated another women i spend my time helping my only Son and Daughter where i can and do as much chairty work as possible its important to keep your mind busy riding my motor bike help friends out so no matter how bad you feel your Life is there is always some one a lot worse off than you remember that Ok Thanks for listening .

Hi Jass

You say you have just moved to your new town and was wondering if there were any other doctors there you could try. It's clear that the ones you have seen have no idea about chronic pain. It has taken me many years to find the right Dr who understands. If you are on the DSP you should be able to access all bulk billing services. I would be explaining to your Dr or any Dr that you are going to see long term that you are on a DSP and cannot afford to be paying these ridiculous prices. I have had physio on a care plan which also included hydrotherapy, which by the way I find wonderful.
In March I had surgery on my right hand due to OA and am due to have the same surgery on my left hand. It has cost me nothing under the public hospital system and that included follow up appointments to see the surgeon and the Occupational Therapist. I also received splints to sleep in and gloves to wear during the day if needed, all free of charge.
I suppose what I am getting at is to tell your Dr everything and it may also help if you kept a pain diary to show your Dr what pain levels you are experiencing. A lot of the time you have to do some things yourself, such as googling different Drs and specialists in your area that do bulk bill etc and mention them to your Dr.
I hope I have been a little bit of help and you get your pain sorted out.
Take care

Thanks, I have an Indian Dr, nothing against foreign Dr's but it seems all the ones around here are just here because they have to do a certain amount of time in rural areas before they can practice in the city. I really hate dr shopping as it looks bad on me, it makes me seem like I'm shopping for drugs which is why I have not gotten a script for tramadol and only getting scripts from the first dr i've seen. I'm heading back to the dr again today to get the tramadol, I just want a few fully pain free days if that's possible. Mentally I'm struggling with it. There's one more local Dr's surgery I can try. I've explained I'm on DSP, he's a good dr he actually listens, but I suspect he doesn't have a good understanding of the services out there. I've called the hospital they have nothing I can access for free and if you go to emergency you actually have to pay! I've been searching google all morning but half the links on these pages don't work, or the pain clinics are too far away.

Well I'm in tears the closest pain clinic is 2 hours away, the sessions they ran I couldn't not get to because I have three children and my husband has to drive me. I don't know what to do...I can't afford to see the specialists here. I can't afford to move back to Melbourne temporarily on my own. I can't afford any sort of care or treatment long term. Tramadol tablets and hopefully a patch is the best I can hope for. How can this be? I get that regional services suck but this is a joke, there are two clinics closer but both charge a large sum for even a consult.

Jass my name is Jenn and I live in Geelong. Where do you live?

Hi Jenn, I'm all the way out in the heart of dairy country Korumburra in South Gippsland. I've only been here a month so finding it difficult to know who to see or find a Dr that can manage all my complicated issues.

Hi Wingman, thank you so much for sharing your story with us today. What a rich and painful story it is, but as heart breaking as it is, it is what has made you the caring charitable soul you are today. All those kiddies you take presents to, when you and your mates go on your bike rides making all the noise that thrills the kids, will be very happy that you care enough about them.

And the fact that you are still doing all this after having all these operations, especially the last one, which I remember you were really worried about it. Well, so far so good. It seems your bike rides and your charity runs are not over just yet. And I think I can speak for the rest of us here, we are truly proud to know that you are out there doing something on our behalf for kids who are less fortunate.

Good for you Buddy!

Peter

Jass, I really think you should give the Aust Pain Society a call or email them. They might be able to help you find a better specialist, who will take the time to look at you properly and then sit down with you and actually explain to you what is going on, instead of just handing you a script for drugs.

Please don't be too hasty with the Psychologists attached to the pain clinics. These are different people to the ones you might have had trouble with in the past. I too have come across those who have gotten their qualification from some university of social justice. These people contribute little to nothing, to the health and welfare of people who are truly ill. Some of them are downright dangerous.

But those in the pain clinics are there, because they have studied chronic pain and have experience in the field. They can help you understand what causes the CP and help you learn to self manage your pain condition. They are not there to put you on the couch and talk about your childhood.

I do realise that 2 hours away is just too far. But if there was any possible way you could attend, I would strongly advise you do. Most people who do go, experience a great deal of benefit from them.

Anyway, at the least, talk to the APS to see if they can help with a better doctor.

Peter

Hi Jass, I rarely post, but I have been following your story and the posts it has generated and felt moved to say something. I back Peter 100% when he says to find a psychologist that knows about chronic pain. If you get referred by you GP you can get 10 free visits. Learning about your pain does help you cope with it. One of the hardest things I had to accept was that this was never going away. My pain is caused by a illness so no operations or anything to help. I have had this for nearly 20 years and it was only when I attended a pain clinic a couple of years ago where I learnt about my pain and how to manage it did I really start to feel that I was gaining some control. If possible I would also encourage you to surround yourself with people who are happy to support you in what ever way you need. You sound like you really need help and I think that is why so many people have answered you. Everyone on this forum knows what it is like to hurt everyday with no break. As Peter has said learning about your pain will help you live with it.

Thank you everyone. It really is very hard to accept that this is my life now. I'm 34 and have been suffering with bi polar, major depression, anxiety (including social) for the last 3.5 years, this chronic pain is just the icing on the cake.
What bothers me the most is that I never injured my back. The only thing that happened was a bad ankle fracture in 2013. I have no idea why I have issues in the C7 or l4/l5 regions. Maybe its from sitting at a computer for up to 14 hours a day for 5 years while i studied full time. Everyone here has injuries or accidents, or an illness to explain their pain...I have nothing just a body that is broken for no reason.
I really sympathise with you Jason, I am at the point where I feel like I'm loosing everything including my family and my husband.
I've been on dsp for a year now due to my poor mental health, I was trying to return to work over the next 12 months and now I dont think that is going to happen. Hubby has been my full time carer and unable to work due to basically raising three kids on his own. The financial strain is unbearable, credit history destroyed and unable to afford specialists and treatment for any of my conditions.
I love my computer I'm an artist/designer with a degree in interactive media design that I fought hard to complete and get top grades. So many plans and dreams that I've had to give up because of health issues. I find it difficult to sit at the computer for longer than 30 minutes, not being able to do the simple things I enjoy is distressing.
I returned to the dr today for tramadol 100mg sr...took one 6 hours ago and the pain is at a 7 right now 🙁 I find it difficult to sleep on nights like this when my c7 is also playing up. while at the dr i noticed he has a certificate in pain mamagement so at least he knows something and agrees i need to get into a pms clinic. I found one at a closer regional hospital but the waiting list has 150 people on it. He is hopefully getting me in tomorrow to get the care plan done so i can start osteopath sessions. At least with that i can try and budget for 2 sessions a month.
I dont know how a psychologist can help with pain...are they able to hypnotise me to not feel it? If not how does talking about the pain help? It certainly doesnt help with my emotional pain. I have a bad bias against psychology that I dont think i can get over. Mindfullness is about as useful to me as standing on my head naked in a forest, i can say to myself " life is great im not in pain" 100 times a day but it doesnt change anything. I only leave the house to shop and see drs, all the things I want to do like volunteer and join playgroup with my son are impossible as the pain or fatigue from no sleep always get in the way.
I'd like to believe that a pms will help but I cant get my head around the psych thing. From what im reading its more of a course about how pain works and they give you excercises to do, but do they prescribe medication, give cortisone, offer surgery etc?
And i did call aps but they were no help...they referred me back to their directory but the information is out of date, sadly theres only one free clinic in my region Latrobe hospital which they didnt have on their list thats now 8 years old. I wont go into all the other stresses I have in my life but things arent good, the last time I reached out for help I had police and dhs get involved. So, it makes me very hesitant to trust anyone including drs, family, support services...the list goes on. My husband is not coping but because i dont have a physical disability theres no support or respite for him.
Sorry for the long winge post, I generally avoid forums and groups because I never have anything positive to contribute, it eventually annoys people, which may be why I have no close friends anymore.