It’s hard for people without chronic pain to be able to understand it. Imagine the last time you sprained your ankle or stubbed your toe. Bad maybe, but with a sprained ankle or a stubbed toe, there’s a part of your brain that knows in a day or two, or a week, you’re going to feel better again.
The difference with chronic pain is you know you’re not going to feel better again. That’s a really hard thing to deal with.
I’ve had fibromyalgia for sixteen years and I can tell you a big part of the challenge is knowing that I’m probably going to wake up feeling the way I do today, tomorrow — and every morning for the rest of my life.
And how is that? The best way I can describe my pain is; imagine you have a bad flu, a really bad dose, one that makes your entire existence ache. Just imagine the cough and cold went away but the ache didn’t. Welcome to my world.
Chronic Pain Australia
The Chronic Pain Australia website answers the question: What is Pain?
Pain is an unpleasant experience in the body. Acute pain is a message in the body warning about danger, whereas chronic pain can have much more complex origins and functions. The nervous system is used to transmit signals around the body to indicate pain.
Many people think that chronic pain means extreme pain. Although chronic pain can be really severe, ‘chronic’ actually refers to how long the pain lasts rather than how severe it is.
Remember the flu scenario? It’s not necessarily a terrible pain but it’s a constant and very often unyielding pain.
Chronic pain or persistent pain is defined as pain that lasts for more than three months, or in many cases, beyond normal healing time. It doesn’t obey the same rules as acute pain. It can be something of a mystery. It can be caused by any number of ongoing disease states, like arthritis, cancer, lupus, or multiple sclerosis. It can also be a consequence of trauma, like surgery or an accident, or it can be a consequence of a minor injury which leaves ongoing pain.
Chronic pain is complex
Chronic Pain Australia says that the longer pain persists, the more complex it becomes. Even if it’s caused by a disease, it now involves multiple body systems beyond the nervous system. The endocrine system, the gut and other body systems start to become involved.
One of the very challenging issues of chronic pain is, much more often than not, it’s invisible. I look ‘normal’. I fortunately am not impaired in any way. I can run and jump and skip and climb stairs, all in the usual manner, if a little awkwardly, but it causes me pain doing those things. So an observer might find it very hard to know I was in pain at all. A lot of people just think I am a malingerer.
Quite often chronic pain has been ‘treated’, but it hasn’t cured the problem. If the pain is from an injury, the bones may have knitted back together, the muscles may be repaired and the nerves may have been rejoined, but the pain might still persist beyond what can be done clinically to fix the issue.
With pain from arthritis, cancer, or in my case fibromyalgia, there often simply isn’t any form of pain relief that works. At all.
High As Mike
Last week I watched the film High As Mike – Medicinal Cannabis: The Ride to Try.
It wasn’t what I was expecting. The documentary unfolds as a fellow known as ‘Mike’ starts an epic journey. Mike has a brain tumour, the sort of tumour that won’t kill him, but it will eventually rob him of his sight, so he sets off on a road trip of discovery.
Mike wants to find out if medicinal cannabis will reduce his tumour and help regain his eyesight.
As Mike cycles from Tamworth in the New England region of New South Wales to Adelaide in South Australia, he visits a cross-section of patients and carers who have already embarked on a similar journey looking for answers. The film gives information about how the current laws in Australia regard the right to try this alternative treatment and the situation regarding the prescription of medicinal cannabis.
National Pain Week survey
The results of Chronic Pain Australia’s annual National Pain Week survey reveal that many people living with chronic pain want access to medicinal cannabis to be simpler and more affordable, with 32% of people speaking to their GP about accessing the treatment.
Pharmacist Jarrod McMaugh, National President of Chronic Pain Australia, says that what they are finding is that people living with pain want to know more about medicinal cannabis but they are facing a range of hurdles when it comes to accessing treatment, including a complicated approval process and the cost being out of reach for most people.
‘People living with pain from across Australia have told us that approval can be at the will of the specific doctor you are seeing, depending on their attitude towards it. What we are hearing very clearly is that they feel there is stigma being attributed to medicinal cannabis which is not necessarily placed on other treatment options.’
This was also the case in High As Mike.
McMaugh says that Chronic Pain Australia would like to see medicinal cannabis treated in the same way as any other legal treatment option, subject to the same regulatory standards and evidence as all other medications used in the treatment of pain.
Things to overcome
‘Barriers such as regulatory burden, stigma, lack of investment in research, and low uptake of opportunities for professional education by health professionals need to be overcome to ensure that everything is being done to better the quality of life of people in pain.’
McMaugh says that community education is also an important part of the process. ‘The survey showed that almost 68% of respondents wanted to gain more knowledge about the science behind medicinal cannabis, so there is much work still to be done in that regard. Chronic Pain Australia will be running more public education sessions on medicinal cannabis for consumers throughout Australia later this year.’
Is your pain invisible?
The survey also showed that people living with chronic pain continue to face high levels of stigma and can suffer from the invisibility of their illness.
‘What we consistently hear in the National Pain Survey, year after year, is the relentlessness of living with chronic pain, with many people at their wits end trying to hold their lives together. The frustration of not getting a definitive diagnosis or inability to find a suitable treatment, the impact on a person’s ability to work, financial pressures, feeling judged or not being believed by doctors, colleagues or loved ones,’ said McMaugh.
The burden of not being believed was strongly reiterated in the survey responses, highlighting how it compounds peoples’ feelings of helplessness and hopelessness. All too often this leads to isolation, mental health issues and a declining ability to effectively manage pain – an extremely vicious and heart-breaking cycle.
Yep, I can put my hand up to a lot of that.
I don’t want to ‘spoil’ the end of the movie, but I will say, like Mike, I am in two minds about medicinal cannabis. Personally, I haven’t tried it. Yet. I have been living with pain for so long now I have forgotten what it’s like to not be in pain, and that in itself is a little bit sad, but I’m sort of used to it now.
I certainly wouldn’t rule out the use of medicinal cannabis, but I’d need to do some more research first.
For more information about chronic pain, visit: www.chronicpainaustralia.org.au.
For more information about medicinal cannabis, visit Dr Google.