Clinical vs Care: A Virtual Chat with Kim about Living with Chronic Pain

I have been experiencing severe pain in my leg and back for approximately ten years. Initially nothing much showed up on scans or x-rays, so I struggled to get any help from doctors. A few years ago I developed moderate to severe osteoarthritis in my hip and back; this was when my doctors first began to take me seriously regarding the amount of pain I was in. I mostly coped with paracetamol and anti-inflammatory medication, but sometimes I needed codeine. After a tough time dealing with my treatment for breast cancer over the last couple of years, my pain levels have increased dramatically.
I have multiple mental health issues which also have an impact on my pain levels.

Initially I was able to get regular (but not constant) prescriptions for Panadeine, which I try not to take every day. For the more extreme days I will take one or two Tramadol.
(My doctor had spoken to me about the addictive nature of the medication he was prescribing, and how to take it as safely as possible.)

Since the change in the law I am unable to receive a repeat prescription for the medication. This means I need to pay for a doctor's appointment every four weeks, in addition to the other appointments I need. Then whenever I see him about the prescriptions, the first thing he always speaks to me is about what the law is and what he is not allowed to do. Rather than having an appointment about my needs and my medical condition I feel it is as if I am at an appointment with a lawyer, establishing what is and is not allowed.

I now have to ration out my medications to make sure they last the four weeks; I am constantly afraid that the government may not let me have any more. The pain I live with is almost unbearable! If they take away the small amount I am allowed then I honestly don't know what I would do.

So, what needs to change?

I hope to see a change where doctors are allowed to prescribe medication according to clinical needs. If intervention by the government is required to help with patients being over-prescribed then monitor doctor's prescriptions, and if any seem to be acting in questionable ways to simply follow this up!

I have been incredibly lucky (and maybe a little determined) to have built up around me a team of people who have helped in different ways.

My chiropractor Katie is wonderful; she listens to me. She has structured our appointments in a way that allows for time to discuss anything that has changed or affected me. She will spend time researching things for me so I can then go back to my GP, better equipped to ask more insightful questions. She has also communicated with my GP on a couple of occasions, during times where I was not able to move forward in any way - acting almost as an advocate.

Over five years ago I was referred to see a physiotherapist – this was not a positive experience.

“Go away and lose 30kg, and then maybe I can help you,” she had said. Trying to improve my situation as a result of that appointment, I began struggling through weekly gym sessions. There at the gym, I randomly encountered a person with ‘exercise physiologist’ written across their shirt. Naturally I went home to ‘Google’ that term, only to learn that this person was one able to help people recover through exercise. This was worth a shot! I contacted the exercise psychologist, and have been a client ever since. At that time the only other person who didn’t dismiss my pain was my wonderful chiropractor, and now I had an exercise physiologist who also took me seriously – this made two professionals! It was through the clinic where I was introduced to Dr. Moseley's book ‘Explain Pain’, and suddenly things made so much more sense. 

Now, when someone tries to tell me that “the pain is all in my head”, I am able to smile to myself.

Of course it is, where else would my brain process different signals and emotions? It was through my exercise psychologist Claire that I finally came to appreciate exercise. Movement, whether this is incidental or planned will help my body function in the long run. Claire also introduced me to a term that I use all of the time: ‘Dangers In Me’ and ‘Safety In Me’ or ‘DIMs’ and ‘SIMs’. These terms are basically about identifying the risk factors (or dangers) that will trigger pain flare ups, and identifying the things that will help either prevent a flare up, or how to best deal with one if it occurs.

I see a psychologist who I have been seeing for quite some time for my own mental health – and I was lucky that she even used to work in a pain clinic. She has helped me with the concept of acceptance: There are some aspects of my pain journey that I simply can't ‘fix’. Every single day, and sometimes many, many times each day I choose to accept that I have pain and movement issues. Now, I know that if I don’t fight them or be angry my overall pain is lessened.

The pain from the arthritis in my hip was leading to significant mobility and quality of life issues.  My GP explained that no-one would be willing to help me at my current weight but approximately 18 months ago was willing to refer me to an orthopedic surgeon to confirm that. The visit to the surgeon went even worse than I anticipated and put me in a deep depression. Suddenly I had to deal with the fact that there was nothing that could be done to even reduce my pain levels.  My sister heard through a friend of an orthopedic specialist, who was able to help people when others couldn’t.

 It was a long wait to get in to see him but I finally got an appointment. I cried after leaving his office because he was very matter of fact. Yes, he knew how to help me and yes he was willing to do so.  It would mean a total hip replacement and I would need to get ready for that but he put me on his list.  I had the surgery a few weeks ago and am already seeing improvements. It obviously won't take away the pain I have from other issues but I am very hopeful that this will help me move forward.

So … what have I found beneficial for coping?

I try not to offer people advice. I bet every person who suffers from chronic pain has been told by multiple people what to do, and not always kindly. That being said, if people were looking for a little guidance I would suggest the following:

- Try not to end up dwelling on your own maladies; educate yourself as much as possible about chronic pain. Listen to Ted talks, read books from the library, attend Pain Clinics or watch YouTube channels. As much as we wish all doctors were able to explain pain many can't, and in my experience it is the understanding as to how your pain works in your body that will help you deal with the moments they don’t.

- If you are struggling with medical professionals, having an advocate helps. I have had allied health people speak to my GP on my behalf, and now I often take my husband or my sister to my appointments to validate my stories. No it's not fair that I need to do this, but it's often a reality that it's needed.

-  Learn your own ‘DIMs’ and ‘SIMs’: What triggers a flare up of your pain? Can you avoid those things or be prepared for when you cannot? What helps: What smells, sights, people or sound allow you to reduce your pain?

The main thing I have had to give up through my condition is walking and travelling, though I do quite a bit of virtual travelling now. I love watching YouTube and reading other people’s stories. The best hobbies I have discovered are painting and patchwork, as both allow the freedom to be artistic while keeping me in the moment. They give me something to do with my hands: Whether I am painting a still life or piecing together fabric for sewing I am only thinking of that specific action. I am able to be present within that moment. Also, I have played a lot of computer games with different people across the country and I am lucky that I am able to still do that.

…I do have to remember to set alarms in my phones though: Getting carried away with my hobbies is so easy to do! So I will set my alarms and remind myself to get up and move around, even if it is just to walk to the other side of the room. After all it is this movement, whether incidental, planned or even the result of a phone alarm that will help my body in the long run.

One of Kim’s beautiful creations.