‘I suffer from CRPS – Complex Regional Pain Syndrome. CRPS is a chronic systemic disease causing severe pain which scores 42 out of 50 on the McGill pain scale. CRPS has many symptoms including skin colour changes and temperature changes from hot to cold, burning pain, stabbing like pains, numbness, pins and needles to name but a few. It can often start in one limb following an injury or surgery, some cases with no known injury and the disease can spread to other limbs and in some cases throughout the whole body. CRPS has a major impact on day to day life, it is debilitating and has a negative impact physiologically for the patient, their family and friends around them.
When I was young, I was always very athletic. I came first in sprinting, loved horse riding and I was very good at gymnastics. I also had an artistic streak, studying piano, singing and gained honors in grade 8 organ. What I didn’t realise then was that I had hypermobility. This is not necessarily a bad thing as for gymnasts/dancers and musicians/ singers this means you are more flexible, which can be an advantage. But it can sometimes trigger other underlying possible conditions. I was not aware of my hypermobility until recently and it now explains so much about my life.
Once I left school, it took me a while to know what I wanted to do, I was an office junior, a travel agent, and then I went to Australia for what was supposed to be 12 months on a working travel visa. I travelled from Perth to Sydney by bus taking plenty of stops until I got to Melbourne. One day I woke up in my hostel room and I was unable to see properly. I got myself to hospital and they just told me I wasn’t eating properly which was common in travellers. I then took a 4 day bus to Sydney during this time my sight deteriorated. I then went to hospital in Melbourne and I was told I had Bilateral Papillitis a swelling of the optic nerve and they were not sure what damage it may do to my sight. I am not sure if this is related to my condition but I am not ruling that out. I spent so many hours listening to music and this saw me through my time there, I made a huge life decision and decided to become a singer…what did I have to lose? I wanted to live life to the full. I quickly returned home after being in the hospital for 2 weeks. The cause was never found after a few MRI scans, CAT Scans, Lumber Punches. However the symptoms reduced over 6 months on their own.
I found a college and became a professional singer. Of course, this is not the easiest path but I loved every minute of it. However from around 2002 I started to fall regularly as my ankle would give way, I would recover from one fall then months later have another fall from the weakness in the joint. In 2005 I had a fall that changed my life forever. I had fractured my metatarsal bone and badly sprained my ankle. I spent 4 weeks on crutches and started to realize something was really not right at all. My foot was freezing cold, it was black and purple in color and was highly sensitive to touch. I had drop foot and could not move my foot at all. The pain was unbearable burning, stabbing, shooting pains, pins and needles, numbness. I went back to the hospital who immediately knew something wasn’t right and after some 12 weeks in physio and after more scans I was informed that I had CRPS – Complex Regional Pain Syndrome. The first thing my physio said was don’t read anything on the internet it will just scare you, it will be a long journey and there is no guarantee of a good outcome. I had some treatment in the Surrey hospital undergoing a ￼￼Guanethidine Block under sedation. Then my treatment was moved to St Mary’s in Paddington under the care of Dr Jenner.
I had many Guanethidine Blocks every 2 weeks nearly, but these were so traumatic for me that after a year I was unable to take any more treatment – my body was too week and after the last procedure the doctors found it too difficult to wake me up. I was on a cocktail of tablets to ease the pain. But I had no life left. I couldn’t work, I was on crutches or wheelchair bound for 3 years and my life felt completely hopeless. Depression started to set in, it felt like the darkest and most lonely place. Many of my friends were unable to understand and completely unable to help me, I lost a few friends along the way. CRPS is completely isolating, its an evil disease and its not called “The Suicide disease” for nothing as many people give up the fight. If pain is all you feel what else is there? But I had so much to live for and I am a fighter. I loved music and in those times of darkness it saw me though.
One day I started to write music again I don’t even know what inspired me, I just picked up my pen and started to write. I thought I had lost all of my passion, but there it was again still inside somewhere and I’m so glad I found it again. I wrote every day and I still do to this day. The music, singing and writing kept me occupied and in some brief moments made me forget the pain as my mind was busy creating. The music gave me hope back, if I could bring back passion, what else could I achieve? So I decided I was going to work at trying to walk to my kitchen and back to the sofa – now in actual fact this is only a few steps these days, but back then it took me a really long time, shuffling and holding on to everything I could find to hold me up, hopping, but I made it there. Now all I had to do was get back to the sofa with a cup of tea, this I hadn’t quite thought through and by the time I made it back to the sofa most of the tea was on the floor. I suffered a flare up after this attempt but I decided not to give up and little by little I found a way to make this small journey. Once I had achieved this, I started to make longer journeys to the bathroom and I even attempted the stairs. Going out without crutches was really scary, after 6 months I thought now is my time to try. Every week my friend Pete would pick me up for a jazz gig. He knocked on the door and I was stood there without my crutches, he asked me “Where’s your crutches” and I said “look…” I walked myself to his car (only a few feet away) with no aids. He started to cry. He said he couldn’t believe it and he was so proud of me. Pete is such a loyal and close friend he was there for me in some of my darkest times. From there I decided I had to try more and I wanted to find more to do in music. I saw an ad for Rock Choir leaders and I went for an audition, I tried to hide my limp and I got the job! (although, now that I know the Rock Choir team, I shouldn’t have been so worried about my limp). It was one of the happiest days of my life and I have never looked back.
When I started Rock Choir 5 years ago I ran 6 choirs. Before I started the job I was never sure how my body would cope – but it did and slowly I got used to my schedule and I loved every second of it, from training to rehearsals and shows. The adrenaline for me was the best part of it as it helped cover the pain I had and the music was so uplifting it always made me happy and lifted my spirits, I had never been happier. I was writing more than ever and started my own original band The Big Bads! Then just over a year ago my CRPS spread up my leg and into my arm and hand. This was devastating as it made it so much harder to play piano and do the one thing I love so much, conducting my choirs and getting to all my rehearsals and writing. I quickly realized that I would have to give up my morning choirs so that my body could recover and so that the CRPS would not spread to other limbs. I found it so hard to adapt and I felt so very low. It felt like all that I had fought so hard to have back could just be taken from me again.
I went back to my consultant who put me in touch with Richmond Stace, a specialist pain physiotherapist, to help me overcome the spread of the condition. He explained the condition so that I understood my role and what I could achieve, and taught me techniques including mindfulness, breathing, motor imagery and specific exercises. We talk about how I will get through some of my conducting, right down to visualizing and practicing the moves before I see my choir. I use nourishing techniques and try to remember to pace myself and move every so often into a different position. We talk though the schedule I have coming up and how best to manage it and every time I start to have a flare up we nip it in the bud before it develops. This year will be the first year in 10 years that I have not had a major flare up that has lasted longer than a couple of weeks!
I can see a future now; a future that means I can deal with the condition I have and co- exist with it. I would like to help others now to regain their lives from pain. I know how hard it is, but if I told you it was possible would you try too? I don’t want people to give up. There has to be a better way and if we can help more people find their path through the pain by understanding their symptoms, using music and techniques that work such as mindfulness, imagery, graded exercise, then that would make me even happier!