It feels like one day I woke up with pain and then it never went away.
When I was about 15, seemingly out of nowhere, I had lower back pain. From then on, every day I would experience varying degrees of back, neck, shoulder, feet and gastrointestinal pain.
I remember the pain always being there, slowly getting worse and worse. I would see the occasional health professional, but did not have any specific pain management plan. It was just part of my life.
Around 2012, I noticed that things began to change. The pain was significantly worse and had spread; I was tender all over. I was also experiencing a lot of fatigue as well as brain fog, IBS symptoms, respiratory symptoms and sensory issues such ocular migraines, sensitivity to light, smells and sounds, and tingling and numbness in my limbs.
I started getting tested for all kinds of things, seeing various health professionals and trying various medications, which continued over the next couple years.
In 2014, I was doing my graduate year as a registered nurse. My pain, fatigue and other symptoms were quite bad. I would wake up every morning feeling nauseous. I used up all my sick leave and then some, which also led to me having no sick leave for the following year. I felt miserable.
Around this time I saw an osteopath, who commented on the nature of my pain, that it was a different kind of pain than that of an external injury. I will always remember her as she validated my experience and encouraged me to keep trying to get answers for the symptoms I was experiencing. It was around this time that I first heard of the condition Fibromyalgia. I started reading about the condition and its broad symptoms, and began to think I could be experiencing it. I was referred to a rheumatologist who agreed with the diagnosis but was otherwise unhelpful. They prescribed me one box of painkillers (which actually had a potential interaction with another medication I was taking at the time) and told me to do some exercise. So I went to see another rheumatologist who was far more helpful and encouraged various holistic interventions.
After years of not knowing what was going on, it was a relief to get a diagnosis. However, it was also strange to be told you have something with such broad symptoms and treatments, that is not that understood and sometimes not recognised, and that ultimately has no cure.
Since my diagnosis, I have seen various health professionals, and had various treatments and tests, including physiotherapy, osteopathy, naturopathy, acupuncture, myotherapy, dietetics, exercise physiology, psychology, pathology, radiology, gastroenterology, Integrated Medicine and so on. Combinations of these things have definitely helped. I feel significantly better than I did before but nothing has completely eradicated my symptoms and it has meant I have spent a lot of money on my health.
Many people who experience fibromyalgia and other conditions and disability are not able to work, so I do feel lucky I have always been able to. However, I always do so with a degree of pain, fatigue and difficulty, and it is hard not to think about the savings I would have if I didn't have to spend my money on my health. I know it must be so hard for people to manage their health when they cannot work and have limited finances, particularly as I have heard of a lot of people with conditions like fibromyalgia who have struggled to or have not been able to get support from the NDIS and the disability pension.
I have worked as a registered nurse and now work as an NDIS support coordinator, I have also completed a Master of Public Health. It is interesting being a person in chronic pain who works in health with other people who also experience chronic health issues. It definitely helps me to relate and empathise with them, and advocate for them. But I also see the behind the scenes negative reality that people with chronic pain can experience. Doctors and health professionals not believing and dismissing people's pain. The stigma that people with chronic pain experience. I have seen health professionals dismiss fibromyalgia as an actual condition entirely.
It is interesting being a person who appears ‘able-bodied’ when I am not. I work. I have studied. I am in a band. I play sports. I socialise. I think people see me doing all these things and therefore cannot believe or recognise that someone like me could be in pain. Again, I feel lucky I can do all these things when I know others cannot. It is hard and sometimes I push myself too hard and then suffer with pain, fatigue and other symptoms later. I have had people tell me I look too young or too well to be in pain and have made me feel like I had to prove my condition and symptoms to them.
At 31, I have now been in pain for nearly 17 years. I do not remember what it feels like to not be in pain. I have good and bad days. I will probably have pain every day for the rest of my life and that is a hard thing to deal with. But I am hopeful that if it does not go away that I will be able to manage it. I also hope that the government and society start to understand chronic pain more, invest in supporting the people who suffer it and acknowledge that it is something that can happen to anyone.