Debbie's story

I have had CRPS for almost 10 years now. C.R.P.S or CRPS is a neurological chronic pain condition.

Our injuries heal, but our brain keeps sending out constant pain signals, our central nervous system malfunctions and even our autonomic system begins to misfire.

The first hurdle we often come up against is being told our injury has healed - and there is nothing wrong with us anymore. Doctors will often tell us that it's all in our head. This is so damaging to us, and often can be used against us by friends and family who struggle to understand what CRPS actually is - long after our diagnosis.

Getting that all important diagnosis, plus good knowledge and understanding that CRPS is a neurological chronic pain condition - can actually come as a relief to many of us - it is confirmation that we are not imagining it, we didn't make it up, and we are not going crazy.

It is possible for everyone to make improvements to their health and mobility and to gain back quality of life. We just need the right support to help us find ways to make the pain management work for both CRPS, which can be very fickle indeed, and the individual - it is hard work, it must be multidisciplinary, but it is also worth it when you see what the alternative is.

I learnt from my pain team that my story didn’t start with my injury, like most people with CRPS, it started much earlier than that.

When you start talking to others, you begin to notice a pattern. Most people who develop CRPS will have a history of going in and out of fight or flight mode frequently during their life leading up to “the event”. We are not predisposed to getting CRPS, we are just a little bit primed for getting it.

For me, I had severe asthma from the age of 3 months until we moved away from Auckland at the age of 6 when it then settled down a bit in our new location.

At the age of 10 I tore all the ligaments, tendons and some bone away from my knee while doing gymnastics. The bone fragments would often move and cause my knee to lock up, putting me back on crutches for a few weeks each time this happened.

I decided I would swap out being on the gymnastics elite team, and I took up the much gentler sport of artistic roller skating - on a competitive level of course.

Now - you might see another pattern forming here.

Not only of situations that would create fight or flight, but also that of a competitive nature, and also being a perfectionist. I didn’t just take up something for fun, I had to be good at it and be at competition level.

So basically, I was always putting pressure and stress on myself, even from a young age.

I was 12 when I got my knee surgery and nothing went to plan. I woke up in the theatre before it had finished. My one hour op had taken over 5 hours. My mother thought I was in recovery, when she heard me screaming but I was still in the theatre.

Thankfully I have no memory of it. It took me a few months to learn to walk again and within the year I was back skating, coaching and looking for something fun to do.

At 14 I added rock and roll dancing to my list. I loved it, it quickly became my happy place and eventually it took over and I gave up competitive skating, and eventually coaching by the time I was 18. 

For my job I trained as a dispensary technician. A fast-paced job that required complete focus and 100% accuracy - again no pressure! 

In my personal life, I got married, had a son. I kept working at the pharmacy, plus owned a business with my husband where I did all the accounting.

I had to finally give up work while I was pregnant with my twin girls who were 6 weeks prem - and by the time my son was 6 and my girls were 4 I had left my abusive marriage and was now a single mum.

I had lived a life of constantly going in and out of fight or flight, and had always put pressure on myself or been in stressful environments. It shouldn't really be a surprise that at the age of 41, I was well primed.

I had just competed at the NZ Rock and Roll nationals, and won in my category. Because let's face it - I just can’t help myself.

I was also running a kids’ rock and roll dance club for teens, and on the night I was holding a fundraiser dance for them I ruptured my calf muscle - that was it - the injury that changed my life. One song, one dance was all it took.

Often when our event happens, there are other things that are going on in our life at the same time - our fight or flight response has been triggered by the injury and the pain response. Then something else adds even more stress.

The perfect storm is pretty much why CRPS happens that time and not all the other times beforehand.

That perfect storm that makes everything hyper sensitive - is all that it takes to throw out our off switch for pain, and tell our central nervous system to go berserk. 

I had no idea what was in store for me. Initially you are just dealing with an injury or surgery. I was pissed off because I did not have time for this. I worked full time, I was a single mum with 3 teens, I had the dance club to run - this injury was a major hassle.

And then my perfect storm hit; two of my children suddenly didn’t come home from their dads one weekend. With no warning or notice, they had decided to go live with their father.

My daughter who did come home, was told that he only needed two of them to stay with him, so he didn't need her. The grief we both experienced was raw and unbelievable.

I kept working to stay busy, I had my leg scanned, they said it looked fine. My daughter and I looked after each other and we cried - a lot.

Three weeks after my injury my leg was not fine - in fact, it was getting worse, so my physio pushed for another scan. I had an 8cm deep vein thrombosis (DVT). 

Now I was angry, and I was scared. So just for fun, that's when we had the Wellington earthquakes! You can add in the sleepless nights and swarms of aftershocks - as I said just for fun.

My GP stopped all physio, started clexane injections for two weeks followed by warfarin.

I should have been referred to the blood clot clinic - but I wasn't, and for the entire 6 months they couldn't get my INR levels under control - so my warfarin dosage was incredibly high - and I remained on weekly blood testing.

Then after everyone had been so concerned about my INR results for 6 months, I was told time is up, you can stop taking the warfarin now, you are all good. 

It's rather scary being in that position, no rescan, nothing. Where is the guarantee that the DVT has gone away and everything is ok? 

Not only was I frustrated with these mixed messages - but each week when I was at the doctors for my blood tests I would report all these strange things happening to me…

My foot is now changing colour - it even looks almost black at times. My foot is a block of ice - even when I am walking around and using it and it should have good blood flow. My foot is swollen on and off, including when I wake up first thing in the morning when I have not been on it all night and I had it elevated.

Things that did not make sense to me, especially when I did not even injure my foot, I ruptured my calf. And the pain - it was unrelenting. The stabbing and burning pain.

But each week I was told “it’s fine” “it’s nothing”, no reasons were ever provided, no explanations given. I was made to feel like I was not being listened to, but also like I was insane, I was imagining it, I was exaggerating.

I had well over 20 years’ experience as a dispensary technician. I knew that something was not right. If a patient came into work, I would have referred them to their GP, so why was my GP not helping me? 

After a year I was losing the feeling in my foot, I demanded to see a specialist - and was sent to a sports doctor who agreed - something was wrong, but didn’t know what. 

Many years later I got to see that he had actually written ‘CRPS?’ in a letter back to my GP, but nothing was ever said or done about it. I had an MRI, got some physio for strengthening and more time passed.

I asked to see a vascular specialist because the symptoms matched needing to see one. It all came back clear. It just didn’t make sense to me. My GP still offered me nothing in the way of an explanation or even medication.

I was now losing my mobility, my leg would feel like it was getting fatigued and was slow to respond - I was sent to an orthopaedic specialist - again sorry no idea, try some innersoles in your shoes.

I changed my GP - I now had cognitive issues, hand tremors, myoclonic jerks, chronic fatigue. I was getting very little sleep and trying to do a job that relied on 100% accuracy. I was beginning to wonder if I had MS, or something seriously wrong with me.

I went back to the doctor because I was getting infections in my foot all the time now and they were slow to heal, plus persistent red patches on my foot and leg that were hot - only my new doctor wasn’t there and I got a locum. The luckiest day ever. 

Finally, a doctor who said to me, “has anyone mentioned CRPS to you?

Have you ever heard of it or looked it up? I believe you have CRPS.”

She started me on basic medication for it, told me to go and research it on reputable sites and learn what I could while she tried to get me into a pain team. It had taken four and a half years.

Of course, ACC then declined everything. Why would I suddenly develop CRPS after four and a half years they said !!

Considering I had practically lived at the doctors for those four and a half years - it was just a little bit frustrating. But after 3 months of fighting them, becoming depressed and losing my mobility completely thanks to CRPS blisters on the bottom of my feet, ACC finally agreed to send me to a specialist to get a diagnosis.

We now tell people not to take it personally when ACC decline them. They do it to the majority of us, right when we are at our lowest.

Once my claim was approved, I was sent to what they advised me was a pain management course - but it consisted of seeing one person, not a multidisciplinary team, and I often had more CRPS knowledge than them, or their knowledge was outdated and would have caused me more harm than good. 

Once you have developed CRPS everything changes. Everything about you, everything you could do, everything you imagined you would do, your relationships, your confidence, your abilities and this keeps changing on your journey. 

Due to this, you become a different person. You go through a grieving process - for who you were, and what you have lost, and each time you have a setback or your loss is highlighted by an event - you might start to grieve all over again. So, getting the right help is important.

I was now back at work part time, and my boss showed me a lecture on chronic pain via the continuing education program. The person giving the lecture talked about CRPS. I rang my OT who had just done an assessment and asked her to get in touch with the person who had done the lecture and who worked for the pain team at Hutt hospital.

From there I was assessed and accepted into the pain program - and finally I had a multidisciplinary team. This is the pain program that the GP originally tried to get me into - and what the specialist who diagnosed me had recommended right at the start and assumed I had already been sent too.

They stuck with me for a couple of years until I was able to really make the progress needed and be able to maintain it on my own. They got me to truly see my stressors, and understand how I need to deal and cope with them and how quality of life plays a major part in pain management.

My life is so different now to how it was even a year ago.

I also could not have done it without the support of Kiwi CRPS. Kiwi CRPS Charitable Trust is a New Zealand charity that supports people and families living with CRPS. When I joined, I suddenly had a community where they totally understood my pain, my emotions, frustrations. They completely get it, like only someone with CRPS can.

You are supported, educated, encouraged and helped along by others who have experienced exactly what you are going through - when back in the “real world” we usually feel isolated, unsupported and everything we do or come across is a battle and just exhausting.

I was warmly welcomed, and I was now in a place where I was totally normal. 

I could ask any question I needed to about CRPS and without fail - someone or many people - would answer me with their personal experience, - tips on what did or didn't work for them and lots of encouragement and best wishes or advice on where to find the answers. This really empowers you and helps to take away a lot of your fear and helplessness.

The main group now has over 400 members - all sharing their personal experiences and stories with each other.

Some will express their fears, and frustrations, and others will step in and offer support to them and become wonderful cheerleaders, having been there in their own journey beforehand. Others will share their achievements and milestones or special moments in their life, showing quality of life. All the time - reminding each other it's ok, you are not alone, no matter what stage you are at, you are still CRPS normal.

People often refer to the group as being their CRPS family due to the safe space that we endeavour to maintain.

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We believe that when you have a rare condition, it is important that each person plays a part in raising awareness, and CRPS is classified as being a rare disorder.

Last year Kiwi Crps aligned itself with Rare Disorders NZ - so that our 400+ voices could be joined with the 300,000 rare voices in the country and be heard. Calling for improved healthcare, diagnosis, medications and services.

It is our hope that NZ will start keeping statistics on rare disorders, and that NZ will join other OECD countries and develop a national rare disorders framework, which will recognise that we have complex needs and face unique challenges.

We need to stop falling through the cracks.