Our blog today is an interview by our Pain Champion Tara Moss with Daniel Scali who is attempting to break a Guinness World Record for the longest abdominal plank. Both have been diagnosed with Complex Regional Pain Syndrome. Tara talks with Daniel about his journey and why he is raising funds and awareness.
Thank you so much for the wonderful work you are doing to raise awareness for CRPS (Complex Regional Pain Syndrome) and chronic pain, and funds for Painaustralia. You were injured 16 years ago, leading to CRPS. Can you tell us a little about what your journey has been like?
Thank you Tara, for taking the time and asking me questions regarding my condition and journey. Growing up with CRPS over the last 16 years has been really challenging, frustrating, exhausting and of course, painful. I broke my left arm when I was 12 and had my 13th birthday in hospital. After the initial break of my arm, I felt like something wasn’t right with the way my skin and overall arm felt, from the top of my shoulder all the way down to my hand. I experienced a shooting, burning and aching pain as my arm was resting which intensified when I moved it. I also noticed that I had less freedom to move my left hand and shoulder like I normally did before I broke it.
After a few months of medical checks and tests, doctors diagnosed me with CRPS. I grew up missing out on a lot of activities like sporting events and was in constant fear of when I would have a painful flare up. My condition inflicted pain on almost everything I did. From putting on my compression band arm sleeve, to having a shower. As I was growing up in my teens I never understood why I had to carry this burden, I always did my absolute best never to complain about it as I never wanted people to know I was in pain.
For a long time, I had physio sessions once a week to help re-program my nerves, so that when I move my arm I don’t feel as much pain. My doctors also found that nerve blocks were the most beneficial pain relief for me and I still have them to this day, at 28 years old. Nerve blocks are an infusion that target a specific nerve or group of nerves to ease and treat pain. It means I stay in hospital for a week connected to an IV drip blocking my complete left arm.
I’ve been lucky enough to have great support from family, friends and my workplace. I work in a family mechanical business, something that I always wanted to do which was still achievable. Moving my arm during the day would set me back, so I’ve been grateful to position myself into office duties. This is the perfect balance for me, as I can still work in the field I want to be in while not having to put my arm under the physical stress. Dealing with constant nerve pain can really take it out of you, there’s been many times where I’ve had to walk away from a group because my arm felt like it was going to explode. Over time as I’ve grown and matured, I’ve learnt to adapt to my situation and condition and have accepted it as part of my journey.
Pain is so often invisible, and that certainly appears to be the case with you. Do you find people are surprised when they discover what you have Complex Regional Pain Syndrome?
Pain is invisible and that’s the hardest thing, because people can’t see it or obviously feel it, so they don’t fully understand what you’re going through. People believe that they may understand chronic pain because they have felt pain before, but it’s completely different when it’s day in and day out for years. People don’t see the struggle that you go through, the sleepless nights and the stress caused by not knowing what the next day will bring.
I often sleep with my arm to my side on a pillow hoping that I don’t roll on it at night as I know that it makes my next day a living hell. My pain changes from day to day and can be dependent on things like weather, emotions, and the environment. People don’t necessarily know what CRPS is and sometimes ask me why I wear an arm band. Explaining CRPS can be hard so I usually say it’s nerve damage and something that I have to deal with on a daily basis. This is part of the reason I’m aiming to raise awareness of CRPS by attempting a Guinness World Record for the longest abdominal plank in July 2021.
I still favour my right arm and make sure I don’t get myself in a situation where my left arm might get knocked or touched in public. When and if I do tell people about my condition (which isn’t often) they’re usually surprised that I have it and even more surprised that I’ve had it for so long. A common question that I get asked is if it hurts more when I train. My arm does flare up when I train and exercise, but I find that it’s bearable and helps me in the long run when it comes to managing my pain. If I don’t move my arm, the pain is often worse.
What was the inspiration for your world record attempt for the world’s longest abdominal plank? It would be a massive challenge for anyone, but especially someone with upper limb CRPS.
I want to inspire people to realise that no matter what setbacks you have or what condition you are dealing with, you can still be the best you if you want to. Being frustrated with my arm has given me fuel to get through my daily battles. I’ve always had a great team in the medical field advising me on what I should and should not do. Training myself and my arm have been a huge benefit with getting through my struggles and really helping me overcome and deal with my day to day challenges.
There’s a very fine line between doing enough of an exercise vs doing too much and then being in much worse pain for days or weeks later. From my experience, the very slow progressive increase in my training has allowed me to continue to do what I can tolerate while not jumping ahead into the “too much” territory. This is a similar training schedule I have used for the plank. Doing the plank makes my arm flair up and increases my pain but doing a little more each day helps me overcome that pain where instead of me feeling the shooting, stinging or burning pain through the whole plank, it becomes a dull numb ache which I can tolerate better, still painful but more tolerable. A plank is as mental as it is physical, just like chronic pain. You feel the pain which is real but you need to overcome that by conditioning your mind. I want to show people that no matter what pain you are in you can still achieve your goals and make do with your life no matter what obstacles are thrown your way. Everyone deals with something but you still manage to keep going, I’m inspired by everyone who has an obstacle to overcome and they still get to where they want to go, everyone dealing with chronic pain I really do understand what you are going through.
If you had advice for anyone dealing with chronic pain right now, what would it be?
For as long as I have had this condition, I’ve always been told there’s a light at the end of the tunnel. There are some days where you might think the light is non-existent, as pain can put a blind fold on you. Don’t let pain determine the person that you are or the person that you want to be, let it be fuel to the person that you know you can be. You’re going to have your wins and will also have your loses but it’s really up to you on how you want to deal with them.
It's also known that individuals experience CRPS in very different way to each other. It helps talking to people who are going through chronic pain, because there are some days where you feel like people ‘just don’t get it’. I also think it’s important to keep trying and trailing different ways of alleviating your pain. Whether it’s medical treatment, physical or even mental methods to assist you.
If you wanted the general public to become aware of three things about CRPS or chronic pain, what would they be?
1. Pain isn’t just physical, it’s emotional as well. Chronic pain doesn’t just affect your body but also influences your emotions, relationships and mind. Be mindful that even though people living with pain/CRPS may not talk about their pain or physically show it, it doesn’t mean they aren’t suffering on the inside.
2. More funding and research is needed for chronic pain. There’s currently no specific way to cure CRPS, but there are many treatments that can help people manage their pain. Do your part to help raise awareness so that more research and funding can be put into finding better treatments and hopefully a cure. That could be as simple as starting a conversation with someone who is not familiar with what chronic pain can entail.
3. Be inclusive and check-in on people living with chronic pain. It can be a sensitive topic to bring up but some days a message or a visit from someone can make a huge difference to their wellbeing.
Thank you so much for your time, Daniel, and best of luck with your advocacy and remarkable world record attempt.
Thank you so much for your time, I am grateful for the support shown by everyone. Thank you again.
Tara Moss, Painaustralia's Pain Champion
Daniel will be undertaking the record on 18 June 2021. You can follow Daniel on Instagram @daniel_scalii. Further information about Daniel's world record winning attempt can be found at https://chuffed.org/project/crps-awareness