CRPS Awareness - Uni SA 2019

These are the speaking notes from a CPRS awareness talk Carolyn gave to medical students at Uni SA last year.

Thank you for having me here today. I am happy to be sharing my story to help create awareness for CRPS.

I imagine right now you are asking yourself; What’s wrong with her? I look normal, don’t I? Fortunately, today is a good day. More about that later.

One in 3,800 people will develop CRPS in Australia. That’s 18 people EVERY day! Unfortunately, not enough is know about this debilitating disease. Education and awareness are severely lacking with the healthcare profession including GP’s, Specialists, nurses, disability, community services and other allied healthcare professionals. Every CRPS sufferer has a story about the length of time it took to be diagnosed, for me it took 6 months for some it is years, and meanwhile the condition deteriorates.

The thing is though that people like me who developed CRPS following a fracture could have done something very simple straight after the accident, taken 500mg of Vit C for 3 months. This very simple thing significantly reduces the risk of developing CRPS! VIT C, so simple. Tell your friend and family.

I was asked to tell my story about living with CRPS. While this has been the most challenging time of my life, going through traumas I had never imagined, there are also things to be grateful for, there are ALWAYS some silver linings. Mind you, it has taken a few years to understand them.

I was at work, walking through one of the university campuses when my ankle rolled on what I thought was a ramp, but was a step with a very small rise. This resulted in a minor fracture and from that, ensued what is now a chronic, lifelong condition. It really can happen that easily! Please don’t think you are immune. Others have developed CRPS after a sprain or surgery and it has also been known to develop spontaneously, however that is rare. It can happen to adults where it peaks at 37-50 years and children where it peaks at puberty, it does not discriminate.

The pain from the fracture was what I expected and I was dealing with it. I then began noticing the pain was not reducing and I was experiencing pain at the site of a previous break. My pain was actually increasing. I kept asking myself if what I was feeling was real. I couldn’t imagine why the pain would be increasing. I reported this to my orthopaedic specialist and was referred on to a foot specialist. After a couple of different treatments, he was unable to think outside the box and I was thrown out of his office and accused of trying to rort Work Cover and so it went on for 6 months. In major pain, not understanding why and being told I am a liar and cheat. I was not in a good place. Eventually I was diagnosed and attended a pain clinic for 6 months for treatment. Remember for some, their diagnosis has taken much longer than 6 months, meanwhile patients become chronic in their symptoms, let alone the mental anguish they experience.

So I eventually had my condition diagnosed, had medication, had had some sessions with a psychologist to help me manage pain. My thinking at this point was, not sure why I still feel unsafe but I can do this, it’s not going to stop me continuing to write the story that I have planned out. I’m not going to just do enough, I will continue to exceed. I was very passionate about my Senior Executive role in a large international company, I had worked hard to get there and nothing was going to get in my way.

I changed the way I worked, including doing more things virtually to reduce my travel. I managed this for a couple of years. Until….I didn’t. As my Psychologist now tells me, I was too much of a Warrior. We call ourselves CRPS Warriors, getting through every day, but I took this to the extreme and not very successfully.

Eventually I found I was taking way too much medication to try to manage the pain, which was increasing and relentless. I started having panic attacks, which were frightening because I didn’t understand what they were. I thought I was having a heart attack. And I found I kept asking myself why I felt so scared all of the time? Why was I not wanting to go out? Why have I lost interest in my other passion, photography. And eventually, why am I petrified of my own garden, why am I seeing my foot move away from my body, why am I scared of the dark and why the hell is the ground doing weird things?

The increasing pain and my bloody-minded approach drove me to a breakdown in April of last year. This isn’t surprising when I look back now. As it transpired, I was dealing with PTSD, CRPS and Allodynia and well, trying not to. It didn’t work.

It’s not a surprise I was struggling, CRPS is the highest clinical pain condition on the McGill Pain Index. It rates at 42 out of 50, coming above that of giving birth to a child, cancer pain or even having a finger traumatically amputated in an accident.

Unlike childbirth or a traumatic amputation, the pain of CRPS is relentless, lasting 24 hours a day, 7 days a week. It’s no wonder I was not dealing with things well, without the proper help and support.

Add to this, Allodynia, where the skin is hypersensitive, the sun can hurt, a breeze, the brush of clothing, bedclothes, the shower are all painful experiences.

I immediately began seeing a Psychologist and saw them weekly for 15 months and now fortnightly. They have assisted me with dealing with the PTSD and pain management.

You will be glad to hear I am also receiving regular medical care.

After exhausting all of my leave, I was medically terminated from my role in a very unceremonious way, after 7 years of service. That was a big blow and of course a grieving process ensued.

At this point I was feeling defeated and at an all time low. My depression and anxiety increased again and it seemed like my world as I had known it had fallen apart. I felt angry, let down and abandoned. Where is my story now? It’s ruined, destroyed and all the other adjectives I came up with at the time.

I progressed through all the stages of grief; denial and isolation, anger, bargaining (what if I had….), depression and then………as my psychology started improving again, finally acceptance and…… a lightbulb moment. I have a different story to write. It’s not better or worse, just different, it’s what I make of it.

So what is it like living with CRPS. The first thing to learn is; sure, go ahead and make plans but be prepared that they won’t happen. Some days the pain is too bad to ‘do’ today. This is a really hard one and one that teaches you many things. It teaches you to be flexible and patient. It also teaches you who your real friends are. Every CRPS sufferer will have a story to tell about the ‘friends’ they have lost. Your real friends understand when you can’t make a planned event and work with you to accommodate an alternative. The others drop away and label you as unreliable or lazy. So, thank you CRPS, I now know who my real friends are and take much joy in their company and appreciate their understanding and support.

Living with chronic pain also teaches you not to stress over the small stuff. You just can’t. Your energy goes into managing every day as best you can. I’m an extremely organised and tidy person, which can drive others a little nuts. I have in my mind how things are going to pan out and that’s it. Not anymore. If things don’t quite go as planned, I don’t stress it. Things will work out in some way…….. Thank you CRPS for teaching me to not to worry about the small stuff. Hey, I don’t even stress if the house or garden get a little untidy anymore.

I have been presenting at conferences and in boardrooms since the 1980’s and I used to do it without notes. A few prompts, but mainly from memory. Well, as you can see today, that is no longer the case. CRPS interferes with the Limbic system in our brain. One of its functions is memory. And so ensues lists, many lists. My husband will attest to the fact that I can now successfully go to the shop with a list and return having failed to purchase entire said list. It’s quite an art! I find myself often stumbling over sentences, trying to find that word that is just on the tip of my tongue, but won’t come to memory.

We all love a bit of retail therapy and with CRPS you get to expand your options……………you can shop till your heart’s content in disability shops. I have quite the collection! I found it very difficult to accept the use of aides and resisted it, to my detriment, for some time. My husband kept gently encouraging me and finally I gave in. You see it’s hard to accept that word – disabled. It’s not what you envisaged. But I thank CRPS for teaching me to accept help when I need it and to drop my stupid pride.

CRPS sufferers have good days and bad days. Some days I am in a wheelchair or using my walker, other days I can walk and ‘look’ normal, while still being in pain. It is on these days that I have been challenged by the public several times in regards to my disability sticker. In the past I would have ripped the head off that person. Today, I feel sorry for their lack of understanding and take the time to explain that disability comes in many forms and it’s not always obvious. I take a moment to try and understand where people are coming from before I react. So I feel I can thank CRPS for making me stop, be kinder and show strength in a positive way.

Unfortunately my CRPS is currently spreading and this is challenging. But being forced to slow down has given me the time to develop a new perspective. CRPS has shown me that I am stronger than I knew and I am grateful for everything my body CAN do and I’m now not grieving the past. I’m looking to the future, to make it the best it can be in my new story that I am creating. It’s up to me.

Please see my strength not my disability. I will leave you with one thought; There are always silver linings.

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