A big welcome back to Emily, who has a little extra spark in her life now! She is now living with a condition called CRPS- and she is here to tell her story of the last year and a half.
Have you ever wondered what it’s like to feel fire inside your body? I was diagnosed with Complex Regional Pain Syndrome in 2014 after a wrist operation. Since that event I’ve experienced nerve pain which can blaze like a bushfire in summer or burn constantly like a campfire. Like its name suggests, CRPS is a complex condition and there is no cure to this chronic illness. I hope to share a little bit of information about CRPS and my journey in learning to have hope.
So, you may be thinking, what exactly is CRPS? Complex Regional Pain Syndrome is a type of chronic pain that affects the functions of the nerves and their reception of pain. Chronic pain is a type of pain that is constant for over three months or more. Normally nerves will react when you touch something hot or touch something spikey, to warn you of danger. They are like a built in alarm system. You say “Ouch” when you touch the hot water, and thank your body for removing your hand from that potentially dangerous situation. However, with CRPS, things get a bit mixed up.
The normal function of the nerves may get into a state of hyper alertness and everything becomes dangerous. This situation happened to my right wrist after surgery in 2014, the nerves became over reactive and became a lot more sensitive to pain. So picking up a mug of tea was interpreted as being life threatening, and I would receive immense pain for doing that action. The nerves in my wrist in this hyper sensitive state, decided to give off different types of pain sensations as well. At any given time it could be tingling, shooting, stabbing, burning, freezing, itchy or numb; depending on the moment.
As a writer, this pain was devastating. Some days I couldn’t write my name without excruciating pain. Luckily, with help of my pain management team and many tools I was able to retrain my wrist to do things without reacting and without danger. My right wrist was stable for about 8 months, slowly gaining strength and with learning about how to pace my activities, I was almost back to living my pre-surgery life.
Six months ago, unknown to me at that time, the nerves decided to come back for round two. I had a mysterious left wrist injury, that my specialist thought was a burst ganglion cyst. At first the pain was localised, and after two months was getting stronger. But suddenly one weekend the pain changed and became widespread and in different areas of my wrist. It began throbbing and burning in places where I had not experienced any pain before. A few days later, my dormant right wrist sprung to life again, and both my arms became weak; I felt like there were two fireballs on both my inner wrists. The pain became so bad that I was admitted to hospital for a week where I was tested and monitored for all sorts of conditions. Morphine gave me little relief, and there were few times where I felt pain free. I was discharged to be an outpatient, where I was instructed to see a neurosurgeon, rheumatologist, my pain specialist, psychiatrist and psychologist.
Currently I’m almost at the end of seeing these specialists to investigate options and reasons. They think that I may have another condition in conjunction with CRPS which aggravated my nerves again. I’ve been able to find relief in different medications, mild exercise, mindfulness and looking after myself. Everything at the moment is uncertain, as I had to withdraw from my last semester of University for my degree and I haven’t been working. I will most likely need to adjust to medications in the next month to make sure I can balance side effects with functionality. At 26, I didn’t expect my life to take these turn of events, and I thought I would be much more functional.
I have good and then challenging days. Being in constant pain is emotionally draining and has affected my relationships and my perception of self. At the moment things are unpredictable – I may not be able to do the washing up one day, but the next I may be able to do the laundry. My energy levels are low and I need to plan my days so I’m not exhausted by noon. Social outings are difficult, as it may take me days to recover from the energy spent. But living with CRPS I’ve learnt to live in and appreciate each moment for what it is. Flare ups (a time where pain becomes more intense than usual) happen and will pass. During these times I’ve learnt a lot about myself and learnt to be kind to myself. CRPS can be flared by emotions, overdoing things, the weather, situations, stress, work and sleep just to name a few. Everybody has unique symptoms and triggers, hence a reminder why the ‘C’ stands for ‘Complex’.
My typing and writing ability alters each day, and I need to be careful not to overdo my capacity. This fact has been extremely challenging as having something I love as one of my main triggers has been heartbreaking. I need to plan and ensure I pace out my writing, so I don’t cause a flare. I have slowly built up my tolerance (hooray!) and I’m incredibly thankful that the brain can learn new things. Retraining the brain to return to a ‘normal’ pain reactivity (eg- typing is not dangerous) is a long road, and some days are better than others.
To be brutally honest, I’m worried about the future. I’m lucky to live in a time of modern medicine, but I’ve had doctors tell me I’m too young for this sort of thing and I’d ‘grow out of it’. I’ve been told it’s all in my head, that I couldn’t really be in that much pain, and I was just looking for pain killers.
But, as much as I’m worried, I’m also hopeful.
I’m thankful that I’ve had friends and family listen, love and believe me. I have learnt that there is always tomorrow, a new day. Each moment will come and go, each as unique as the last. And I have learnt to say thank you for each experience.
Each person with CRPS or a chronic pain condition will experience different symptoms and have their own story to share. I hope that by sharing mine you can understand the battles and fires people living with CRPS go through. But most of all, I hope you can see through the fire and see me behind it all, someone just like you- with a little bit of extra spark.