Tag Archives: chronic pain

“Dizzy” – by Tommy Roe


A great song, I used to love it.

Used to.

That is until the inside of my head has impersonated a spinning top for the last nine weeks or so, without stopping for one microsecond.

I’ve had dizziness before with my illnesses (Fibromyalgia, ME and CFS) but it has always just come and gone, sometimes violently. This time it’s a constant whirring, with someone controlling the speed remotely. One moment it is a reasonable one or two out of ten (on the dizziness scale) then suddenly it’s up to seven or eight, with accompanying nausea and a feeling of having absolutely no control, over anything.

It’s a bit like being in a spinning, plummeting airplane. Or at least that is how it feels and how my imagination pictures it to be.

I’ve given up all drugs except my painkillers, which I have also reduced by two thirds in the hope of the dizziness stopping. I thought it was a side effect, as it started when I began a new drug. Now I just have more pain…and dizziness.

Maybe it’s not though, and that scares me more than anything. What if it is here to stay? I’ve barely maintained my sanity for nine weeks, I have no idea how I would survive nine months!! Oh please god no!

So now I hate this song, yet cannot get it out of my head. Much like my dizziness.

What is so damn difficult??


“Pain specialist Dr Marc Russo said his clinic in Newcastle treats about 2,000 new patients with chronic pain every year.

“And I’m very worried, and as many of us in the faculty of pain medicine are very worried, that ultimately it will lead to the prescription of more opioids as a sort of back-stop measure and we know that this carries significant risk and often very little benefit,” he said.”

So opioids continue to get a bad name, and cause more deaths by overdose than car accidents per year in the US because people take so many to try to stop their pain.

And yet CBD oil, which would earn the Government tax dollars instead of costing them by subsidising prescriptions and paying for opioid patients using hospital beds.

It is such a simple, straight forward decision with SO many benefits, why are we not following 40 other countries and giving chronically ill people the ability to buy it??

As usual in our society in the last ten years, in many areas, it makes no damn sense.

Reference here.

Internal dizziness driving me crazy!


For about seven weeks now my brain has felt as though it is a spinning top.

Some days it is bearable, others are filled with headaches, migraines, nausea and very little sleep as it worsens when I lie down. To be honest it is incredibly difficult to live with and I wish someone would put me in a coma until it was over. It is that bad.

It began when I was taking yet another approved drug for my condition and lasted several weeks, so I stopped taking that drug. My doctor, a wonderful woman, during my last visit said it could take a while to wear off. That was a month ago.

Since then I started another drug to help my chronic illness symptoms of complete body pain, incredibly sensitive and painful skin (every square millimetre), horrendous headaches, zero energy, the dizziness (I have had it off and on for nearly three years now) and general complete lack of quality of life.

It is, by my count, the eighth or ninth drug I have tried, perhaps more. Each time you have to build the dose slowly over time, then if it doesn’t work or you suffer a side effect (I’m good at those, there are dozens to choose from) you have to slowly reduce the dose to get off it. So months are spent doing this just to feel worse.

Why? Because they are all so incredibly dangerous. Eaxh one is highly addictive, has extensive withdrawal symptoms and can cause other significant damage if used too quickly, or just too much. All very dangerous to those who get fed up with feeling ill and so just keep increasing the dose, until they die. Opioid based drug (which the vast majority are) overdoses kill more people in the US now than car crashes.

Cannabis oil doesn’t kill anyone.

Placed on the skin and without any THC there is no high, are no side effects and no awful reactions if you increase or decrease the dose.

But it is illegal here in Australia without paperwork a mile high and a ‘luck of the draw’ response to your application. Less than a few hundred have been successful in over a year. You then need to resubmit more paperwork after six months.

You also need a letter of recommendation from a specialist, most of whom somehow choose not to believe over thirty years of pure and incredibly extensive scientific research into the positive effects of CBD (cannabis) oil.

Why? Perhaps because it is not backed by a big pharmaceutical company so it doesn’t come with trips to Hawaii for ‘education purposes’ or first class tickets to highly desired travel spots (‘conferences’) if you prescribe a set amount.

The only people who can make money out of it are governments, in 40 countries, who have legalised it and tax it. Some States in the US have completely paid off their debt and still have money left over for housing homeless people because the allow and tax this huge industry.

In Australia we do nothing. There is no financially backed lobby group that can take you to a conference at an exotic location to educate people of its benefits, just several hundred thousand sufferers (probably many more) who know it works yet are criminals if they use it.

Yet who are the criminals here? Those who choose to use a naturally occurring herb to take away their immense pain and suffering, or those who prevent the hundreds of thousands of others from doing the same because there is no patent and therefore no money to be made, no ‘promotions’ to offer.

The big pharmaceutical companies would make nothing from CBD oil and it is banned. Coincidence?

When will our governments, State and Federal, realise the amount of tax dollars they can make, the hundreds and hundreds of jobs that can be created, and most importantly the people whose suffering they can ease just by legalising a herb? It has more scientific research behind it than most of all the other drugs I have taken, combined, that cause emergency trips to hospitals and help overload our stretched system. Cannabis oil doesn’t.

It is such a clear decision, yet has not been made, that money must be the answer. Whose pockets would be lighter if people started to take something with no side effects or addictive properties instead of extensively promoted prescription drugs?

Pharmaceutical companies.

Wonderful to know what their main motivation for being is. In fact just read the Executive Summary of the recent interim report into our financial industry here in Australia and the same applies. Greed.

In the meantime I’ll just keep spinning. If you thought your last hangover was bad, try one that has lasted six weeks and counting.

I know what can help me, CBD oil, but greed and institutions with their aged heads in the sand prevent me from accessing it.

Aren’t we meant to be a humane society, where the sick are allowed to be treated with what makes them better, no matter who benefits?

Exactly like the flu virus, only completely different


The flu virus changes every year, making it difficult to treat and meaning a different vaccine is needed yearly.

With ME/CFS and Fibromyalgia the treatment changes almost for every person, so different treatments and drugs have to be tried for every person to find one that helps.

And you get better from the flu, you don’t get better from what we have.

So in fact it’s completely different from the flu virus – my bad.

So how do you find a cure for something that affects those who suffer it so differently? There are so many stories of different drugs that ‘gave me my life back’ that it is impossible to engineer one cure for us all.

Of course I hope I am completely wrong.

There is of course one supplement that actually works for over ninety percent of us – cannabis oil. No THC so no high and therefore no possibility of addiction, but because of the word ‘cannabis’ it has more opposition than an Australian Prime Minister.

There is more than thirty years of science that proves it works, has no side affects and is not addictive. Had it been developed by a large pharmaceutical company it would already be on the shelf.

Unfortunately for the pharmaceutical companies they have no money invested in cannabis (to my knowledge) so they help form the ‘against’ argument – no profit, no health.

If I won the lottery I would start a business here in Australia producing cannabis oil and I would pay taxes, making the government a fortune and a few hundred thousand people feel human again.

Why is it so difficult?

If we have trouble describing our illness how can we expect others to understand it?


For my fellow sufferers of Fibromyalgia, ME and CFS we have a unique issue.

To all outward appearances we appear perfectly healthy, and yet, as I have explained in many previous posts, we are anything but.

I will spare regular readers the long list of ailments we suffer from. The main ones for us all are pain all over our body that never quits, dizziness, brain fog and devastating exhaustion.

I think this is enough for people to realise that we cannot be judged by how we appear. And yet many do.

Unfortunately if someone asks what we suffer from we cannot say ME or CFS (at least in my experience). Firstly they have no idea what ME is (say the full name and watch their eyes glaze over) and secondly mention CFS and you risk receiving “oh you’re one of those” looks. Everyone is tired in today’s world, and if you call it exhaustion people have difficulty making the distinction.

Fatigue, exhaustion, aren’t they the same? Well no actually. Fatigue means you are very tired whereas exhaustion for us is not being able to get out of bed, sometimes for days at a time.

Still, it doesn’t quite get through to them.

Fibromyalgia though, well that’s a lovely long and confusing word so it must be important, plus didn’t one of those pop stars cancel a tour because of it? But she’s alright now though isn’t she, so when are you getting better?

Hmmmmm….give us patience.

Telling people there is no cure still doesn’t seem to sink in, because the next time you see them you are usually greeted with, “Hey how are you feeling, any better yet?”

So, what part of ‘no cure’ did you not understand?

Actually, I believe it is our fault that we receive these reactions. If people do not understand them it is the message and the messenger that are failing, in my opinion. Harsh that might be, but I believe we need a simple, easy to understand explanation of our illness or we will never be understood.

Suggestions? Mine is rather simple and to the point.

“I have Fibromyalgia. Basically it means every nerve in my body has decided to tell my brain I am in excruciating pain 24/7, without any reason, and there is no break from this as no-one knows why it happens or how to fix it.”

I know this leaves out many of our symptoms, but I find it gets the message across. If they want more information then go for it, but in the interests of raising awareness for our condition I find it is a great place to start.

If we try to tell them everything they will remember nothing, so baby steps are required.

If you have a better response please, tell me so I can use it!

By the way, as a conversation starter and to add to the credibility of our condition, please visit The Awareness Store and get yourself a Fibromyalgia bracelet or necklace or, if you’re daring enough, a t-shirt! No, I receive no commission or benefits whatsoever, I just think they are a great idea and my wife and I wear their purple bracelet.

It’s a great conversation/awareness starter, and they can be found here.

No, were are not antisocial. Just chronically ill.


One of the biggest issues I encounter with family and friends is, “why don’t we see you much anymore? You have withdrawn yourself away from us?”

My standard response is, “I’m home 98% of the time so you know where I’ll be, just let me know before you pop in so I can try to look respectable or, worst case, ask you to please visit on another day.”

We are not withdrawing, in fact we crave contact with others. It is just that we often have no energy to hold up a conversation and it can take us days to recover from one.

Nothing personal. In fact we love you dearly and appreciate enormously your support and concern for us. You have no idea what that means in our daily struggles and we simply cannot tell you how grateful we are!!

So please understand we really want to see you, our lives are utterly boring without you, just let us know before you pop in.

Unfortunately many will still see this as you withdrawing and some will take it personally, but we need to put ourselves first or our condition will never improve.

We love seeing people, it makes us feel normal and is often the highlight of our day, we just have to be careful as to which day we choose.

Forgive us our daily absences, they are not an intentional barrier. We prefer human contact (as do we all), just don’t expect a tidy house or me in anything other than my PJs.

Most days we are silently screaming for a break in our boredom, so come on in, you know where we are, we’re not going anywhere!

What’s in a name? Everything!


The world renowned scientists in Israel have 30+ years of verifiable studies showing that CBD oil significantly reduces (and in some cases erases) chronic pain with no side-affects, and it is not addictive.

Other studies around the world have had the same results. Even medical studies here in Australia.

Yet we (those of us who suffer daily, with no or very little quality of life) are not allowed to access it because ‘wowsers’ hear the letters CBD and react with, “That’s cannabis! You just want to get high! Just like those 60s hippies!”

CBD (cannabis oil) contains NO THC, the stuff that gives you the high, so NO we CANNOT get high, we just want our chronic, debilitating pain gone. Oh, and to live a life approaching normal would be a huge bonus, thanks.

So if it’s the name that is causing all this resistance, why not change it? Call it something in Latin, people seem to love that. Or just something unpronounceable and therefore important-sounding like all the other drugs on the market, that are addictive and have a list of side-affects that take fifteen minutes to read and over two hours to understand. Then there would be no overreaction.

If they changed the name to simply ‘vitamin oil’ there would be no problem. Vitamins are easily imported, advertised and sold with claims that they ‘may’ assist every sickness known to man. I am sure it would be government approved within days, if government approval was even required.

But it currently has the name ‘cannabis’ in it so I must be a strungout hippie, chasing a high.

It’s all in the name.

People cannot get past the image that pops into their head when you say ‘cannabis’, of smoke filled rooms and people rolling around in their own psychedelic world. Yes, it should be their problem and not mine, but I have been in constant pain for over two years now because people cannot let go of their deep-seated biases.

I must admit that, until I became chronically ill, I probably would have thought the same – hippies out to legalise their highs from smoking weed.

It is a very deep-seated stereotype.

So I cannot blame anyone or get angry, there isn’t any point. I will, however, continue to write about it here and to my local politicians because chronic full body pain, with not a second of rest in over two years, can really get you down.

Then there is the massive financial saving.

I read daily of people with my condition, or worse, calling ambulances and going to hospital so they can be placed on higher pain medication for a while. Each visit costs you, the Australian taxpayer, thousands of dollars and clogs up an already stretched health system.

Personally, over the next few years I could save you all tens of thousands of dollars if I was allowed to buy what I know helps my condition.

Yes I can try jumping through hoops and attempt to navigate a mountain of red tape (and I really mean a mountain because I have seen it), but that costs a fortune in time and money (a medical professional has to fill it out, paid by Medicare out of our tax dollars) and I don’t think I would survive the stress.

Red Tape. If only we could grow cannabis oil as quickly as Red Tape, everyone in pain would find instant relief.

The money we sufferers would save the government in unnecessary ambulance callouts, hospital stays and subsidised (addictive) painkillers would be in the millions. Money I am sure you would rather the government spent on other things, or even better returned to your pocket.

Which leads me to my final point. With dozens (closer to hundreds now) of studies over decades as proof that CBD oil is safe, not addictive, not capable of giving anyone a high and yet people are stopping us from accessing it, can we sue these people for the pain and suffering we go through every day?

It is criminal, in my pain-filled opinion, that I know what helps my chronic pain, I’m prepared to pay for it myself and save the government thousands in subsidised medicine, but I cannot buy it because the government here disallows anyone to import it, or sell it without a pathetic initial prescription that lasts just two months.

Alas it is all in a name. How about we call the oil Fred? Fred oil sounds pretty harmless to me.