Back in 2010 I first noticed pain and muscle tension in my calves while pregnant. I subsequently lost our daughter in pregnancy (I'd previously lost another) due to incompetent cervix and infection.
Walking felt like walking through concrete but given I was overweight I was told to push through. Around this time I had a bulging disc in my lower back, was trying to complete nursing placement for my degree and deal with the grief of child loss for the second time.\
I had a good GP who kept expressing that he thought I had fibromyalgia. I was seen by a Rheumatologist and patted gently on the arm and told it was from grief and to do gently exercise.
With a long list of health complaints that included chronic headaches, brain fog, areas of paraesthesia on my back and a history of neck pain, it was at this point I had an MRI and was seen by a Neurologist who ruled out anything nasty and thought the diagnosis of fibromyalgia seemed most likely.
I battled through my nursing degree and a subsequent pregnancy resulting in a living daughter.
Later, fatigue was added to my symptom list and I had bizarre 'irritation' sensations in my legs along with muscle weakness and pain. I still didn't feel like I was being heard and my weight always felt like a barrier to being taken seriously.
In 2014 I had more health complications being told I was pre-diabetic, developing plantar fasciitis and heel spurs, which meant that I could now only nurse in a community capacity so that I wasn't on my feet for long periods, I looked in to weight loss surgery.
One year later I had gastric bypass surgery and subsequently lost over 50kgs. This surgery has saved my life but in other ways it has complicated it. I feel my pain has increased greatly since and also experience chronic pneumonias.
If people ask me to describe my pain I find it very difficult.
Every day I wake in pain, at night I often wake with pain. Some days it's only a low grade and other days it stops me from daily tasks. It's in my joints, muscles, everywhere. It has a few different qualities and intensities.
I hold a lot of pride as a wife and mother, especially when it comes to my youngest who is 7. She notices that her mum isn't like the other mum's and asked me once why I don't work like her classmates Mums (I had to give nursing up).
In the last 4-5 years I found a GP who is one in a million. She 'missed' A pneumonia in me because I rarely have a high temperature, my oxygen saturation are not low and they can't usually hear anything in my lungs.
After a little bump in our therapeutic relationship where my GP told me I was dependant on opioid analgesics, we have waded through what works best for me and are both able to be frank with each other. She now knows my lungs just from touch and listening and has supported me to find a private pain clinic.
I was referred to a public one while still nursing and was angered to read it involved going to classes on learning about the different pain types. I was trained for this and I knew my body.
My pain specialist not only listens but has been supportive. Even when I chose not to follow up with the psychologist, OT and osteopath within his clinic. In 2018 my GP ran bloods for autoimmune markers (ANA) and I got a high positive. That and my symptoms put me in to what is termed Undifferentiated Connective Tissue Disorder.
I tried a 5-day ketamine infusion with no results and then pain patches but while they helped short term and it felt amazing to 'do' normal tasks, my body got used to them.
During the ketamine infusion I had extreme shortness of breath and left sided chest pain but initially it was treated as anxiety. That was until a CT showed lung inflammation and a little fluid surrounding my heart consistent with connective tissue disorder.
Going back to the pain specialist this last time he squashed the fibromyalgia diagnosis and told me if I need pain meds, I need them. I do question taking them and usually hold out until the pain is intolerable. I also agreed to see the Osteopath within the pain clinic.
This was the best thing I ever did. She explained how she can help me make my circle of my world bigger as it had shrunk right down due to pain. I started graded exercise and am now at a point I can walk around local sporting ovals with friends and family. I never thought I'd get back to walking. I started studying a degree in nutrition medicine in 2018.
Christmas last year I managed to do a little sitting and standing on a paddle board. I felt like I could take on the world. Nothing has changed with my pain or muscle issues. I'm still trying to find relief from pain but my world is bigger.