Online exclusive
What’s It Like To Be is a regular online column in which New Zealanders from all walks of life share first-hand experiences. Here, Paulette Crowley talks to Deb Beazley about what it’s like to live with complex regional pain syndrome. It is one of the conditions in the spotlight during Rare Disorders Month, which starts today and goes through March to highlight the 300,000 New Zealanders living with a rare disorder.
“I was dancing to the last song at a rock’n’roll night when I felt a bang in my calf muscle, which ruptured. A few weeks later, I ended up with a DVT [deep vein thrombosis - blood clot]. That was back in 2013.
I spent six months on medication for the clot, which eventually went away. But there was still something really wrong with my leg. All these weird, random things were happening – my leg would swell up and change colour. Sometimes it would go cold, or my body would have a massive spike in temperature. It made no sense at all.
The pain was excruciating; I could barely walk. I kept asking doctors what was wrong, but they pretty much told me my symptoms were all in my head. After the DVT had gone, they said there was nothing else they could do.
It was a horrendous struggle to work with that pain, which caused chronic fatigue. At the 12-month mark I threw an absolute wobbly at my doctor, who sent me to see specialist after specialist. None of them knew what was wrong with me.
Three-and-a-half years after the injury, I lost full mobility. I was bed-bound and couldn’t leave the house without a wheelchair. A locum GP then told me she thought I had complex regional pain syndrome (CRPS). Apparently that diagnosis had been queried by many of the doctors I’d seen but it was never followed up.
CRPS is when the body overreacts to an injury, which makes the central nervous system, peripheral nervous system and immune system misfire and go haywire. It can cause severe stabbing and burning pain and many other problems, including issues with movement and sleep.
The pain is severe and always present – it just slides up and down a scale – and doesn’t usually respond to pain medication. CRPS can happen to anyone after an injury but if it’s diagnosed and treated within 12 months of the injury it can be sent into remission.
My CRPS was officially diagnosed four years after my injury, which meant those opportunities were taken from me. I was told I might be able to make some gains with therapies but basically, I was stuck with it.
ACC was focused on trying to get me back to work, which was stressful and made my CRPS worse. It wasn’t until a few years later that I was finally able to start the type of pain management programme that I needed to learn how to live with CRPS.
Thirteen years on, I have learnt to live with the pain. I don’t have the same level of chronic fatigue I used to, as long as I pace myself.
When you’re in really high, intense pain it’s easy to want to curl up into a ball and not move, to protect yourself. But in order to keep functioning, I have to keep moving gently, even on a bad day.
On those bad days, I get brain fog – like I have a concussion – and lose my words. I’ll probably only sleep for about three hours at night. If I’m rushed or stressed and don’t pace myself to keep on top of the pain, my autonomic system [which controls involuntary bodily functions like heart rate and digestion] will crash. I go into a bit of a shutdown with nausea and my blood pressure and temperature go way up. I can’t stand up and I can’t see. Someone has to help me to bed so I can sleep for a couple of hours to come right.
On a good day I will sleep five or six hours and only wake up once. I can have conversations that flow nicely – I don’t have to work too hard to think about what people are saying to override the pain.
Managing the day is about balancing out what needs to be done in small blocks of time. I might start with 30 minutes of basic chores that I can manage, or some time at the computer for my volunteer work with the Kiwi CRPS charity.
After that, I’ll do 20 minutes of a restful activity, like meditation, chatting to a friend on FaceTime with a coffee, or sitting in the garden. Then I’ll follow with a reward activity that gives me feel-good endorphins, like gardening, grooming my animals or a therapeutic walk at the beach. I repeat that pattern a few times each day.
I have to pick and choose what to do so I don’t exhaust myself. Sometimes I might be able to drive if I’m not too tired, otherwise I have to have someone drive me home.
These techniques help me stop going into a boom-or-bust cycle and have been life changing. I now have a quality of life that I didn’t have in the past but it took using pain management strategies every day to get there.
Now I can do things that are fun and enjoyable. I got married at the end of last year to my high school sweetheart. We play mini golf, 10-pin bowling, go on adventures and play Scrabble and PlayStation. I work hard to have good days and now understand more about the links between being happy and having fun, and how that provides good endorphins and lowers pain levels. Every day is still different – the pain is still there but I am now able to do things to keep functioning, with the help from others.”
Rare disorders in NZ:
Complex regional pain syndrome is classified as a rare disorder and Deb is one of about 300,000 people who live with a rare disorder in NZ (about 6% of the population). Half of those affected are children. However, the classification system for diseases used by the NZ health system does not include most rare disorders, so there are no specific numbers of individual disorders. Today is Rare Disorders Day, which begins the month-long Rare Disorders Month campaign in March.
Now in its 25th year, the awareness campaign will see Rare Disorders NZ mark the occasion with an awards ceremony at Government House in Wellington for those who have made a significant difference to rare disorders in NZ.
To find out more about Rare Disorders Month, see Glow Up and Show Up for Rare
