Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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My Story - CRPS Journey

CRPS JOURNEY

2015-10-21

CRPS JOURNEY

 

This CRPS Journey has come from a young lady from South Wales, UK; Jamie-Lee who is just 19 years old. Jamie-Lee’s CRPS journey began 5 years ago in 2010 when she was just 14 years old. Please take a moment to read Jamie-Lee’s journey of living with Complex Regional Pain Syndrome (CRPS).

Here’s Jamie-Lee’s story:

 

MY CRPS STORY

My name is Jaime-lee Penn-Bowen  , I am 19 years old and I live in South Wales . I would just like to say a quick thank you to Victoria for all the work she does to help us all and for asking me to share my story .
CRPS Journey - Jamie-Lee 1

CRPS Journey – Jamie-Lee

  My story begins in April 2010 when I went on school camp for teenage girls to learn team building skills. We went to working out back cattle ranch about 2 hours away from where I lived. We slept in raised bunks on groundsheets and just a shade cloth above our heads. These outdoor living quarters would be home for ten days. Teaching us about personal safety around wild animals, with dingoes visiting at night, as well as respect for animals of all varieties, both wild and domesticated. I had the most amazing time at the camp, I loved all the fun activities that went on in camp including bareback horse and cattle riding, horsemanship skills, campfire cooking and so much more. I returned home with a more confident approach to daily life, and I was willing to be part of a team again, something that I had shied away from since my bullying experience at St Phillips College. On my return, I had a boil on my right knee, so my parents took me to the doctor, where I had course of antibiotics, and within ten days it had healed, with just a red mark remaining. In the three weeks that followed, I started to complain of pain in my right groin. I was checked me over but there was no lumps or redness, it was put down to the fact that I was a pubescent girl so period pains and cramps were blamed. Due to the pain in my groin I decided to pull out of  a 5 km endurance race which I had been training for. From that moment on my family started to see the warning signs, as I have never pulled out of events like this, I don’t like to be the one that quits. Two days later, I was getting ready for school when suddenly the pain started and I started crying as I was in excruciating pain. My mum who was a nurse at the time examined my leg and groin and was shocked to find red streaks, which indicated infection in the lymph system from my right groin down to my thigh, ending at my knee. After my mother examined me she immediately knew that infection was present. She then rushed me to the emergency Department. Luckily, my mother was a staff member at the hospital which helped speed up the process as we went straight through to triage. After a hasty referral to the surgical team,  we were sent to the ultra sound scanning room so that they could investigate the origin of the infection. The problem was apparent immediately. As the ultrasound probe was gently moved over my groin, despite my screaming and writhing around in pain, an abscess, 5 cm by 3 cm in size, was detectedNo wonder I was in so much pain! I was immediately admitted to the children’s ward, where again my mother’s staff privilege was useful , As the ward manager made sure that I  had a side room, so that my mother could stay with me. The decision was made to treat conservatively initially, with IV antibiotics and pain relief. For three long days, and nights, I cried; as the pain was uncontrollable, resulting in being unable to move, walk or eat without  distress. On the fourth day they scanned me again: the abscess had grown, and an emergency theatre slot was scheduled. As my mother nervously waited in the theatre staff room, an anaesthetist who had assisted in sedating me due to my  distress he then went and spoke to my mother . The surgery went as well as it could. The abscess was drained, and due to its size and the risk of infection, it would have to heal naturally from within. It could not be sutured, therefore it left a huge, gaping hole that was packed with ribbon gauze. That night I finally slept, only waking a few times in the night, when IV fluid bags were changed or IV analgesia was administered. From then on we all thought the worst was overThe following morning, as we awaited the surgical team rounds, the nurses were busy with the children who did not have parents in attendance. The surgeon and his entourage of medical students walked in, and began chatting. As my mum walked to the door to see if the nurse was on her way with the dressing trolley. As she turned to look at me, she saw the surgeon’s hand reach for the wound packing: it was as if  she was behind glass, unable to be heard. She shouted, “Stop no! Please God no!” Instead of waiting for the nurse to return with the saline to soak the gauze pack before removal, he wrenched the pack out revealing raw bleeding tissue. I  was hysterical and uncontrollable. I  pushed myself  off the bed, blood spurting from the wound and the ripped out IV cannula sites. As she reached me, I had curled into the foetal position on the floor, shaking and screaming. Blood and serous fluid leaked down my legs, being absorbed by the hospital gown. The surgical team made a hasty exit, shouting orders for pain relief and assistance, while nurses rushed in around us. My mum cradled me in her arms, rocking me , until they came with a morphine injection. By that time my mum would not let them move me until it started to take effect. Alone, she gently lifted me onto the bed, where she laid holding me tightly. It took sedation, and many hours of comforting to get me to a stable conditionUnfortunately, the extreme pain she endured triggered a reaction in my brain, and ever since that time, whenever I experience pain, anywhere in my body, I feel that pain in my right leg. The term for this condition is Complex Regional Pain Syndrome (CRPS.) The abscess site took five months to heal, with initially daily packing and dressing then changing to alternate days. A large scar remains; we jokingly call it my ‘shark bite’ because for a girl who loved wearing bikinis, I can now only wear shorts for swimming. The scar is a constant reminder of a surgeon’s thoughtlessness and presumption. The mental scar, which haunts me at times of weakness, is a continual reminder of the pain.  

 Alice Springs Hospital 3 days after my operation

CRPS Journey - Jamie-Lee 2 - Alice Springs Hospital

CRPS Journey – Jamie-Lee 2 – Alice Springs Hospital 3 days after operation

  Since then I have had a couple of hospital admissions for my CRPS in Queensland and Tasmania. Writing about my story has brought back lots of tears and painful memories but I did it so that hopefully it will encourage others to speak out &  share their story and to raise awareness for CRPS. I also hope it will help other people like me realise you are not the only one, that there are other people who have the same horrible condition and that they are going to be there for you, just like Hannah Moore was for me.  I just want to say a quick thank you to Hannah for sharing your story with me and for introducing me to other people like me .  

Jaime xx

 

We would like to Thank Jamie-Lee for sharing her CRPS journey as we understand that it takes a lot of courage and strength to speak out about CRPS and the journey of what it has taken to reach this point, so THANK YOU.

Share Your Story

Would you like to share your CRPS journey? We are looking for CRPS sufferers and carers or loved ones to share your stories so others realise that there are other similar people out there. Contact us with your story and a couple of photos. Please do share Jamie’s CRPS Journey on social media using the buttons below.

  Last Updated: 21/10/2015

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About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Dr. Michael Cooney

    Thank you for sharing your experience Jamie. I have no doubt it will provide much comfort to others who have the same experience. I tell my patients to reach out and share. There in internal and external strength and power through sharing. Wishing you every success going forward and many more good days than bad. Dr. Cooney, New Jersey, USA

  2. Juliana Engel Storms

    greetings, Jamie. Thank you for sharing your CRPS experience. I have been working on writing my own. I find it helpful to have the reminder that this is only a part of my experience and not who I am as a person. There is so much more. The “princess in a tower” collective has been a great resource and I appreciate the community. My heart is with you.

  3. john Butfield

    You’re blog just brought me to tears. You have always been a strong willed girl so to make you crumble like that, the pain must have been out of this world. You put up with it so well and without a lot of fuss. I miss you out here in Australia. I,m so proud of you. Love you. Grandad xx

  4. jaime

    thank you mum , love you xx

  5. Sarah Jane Butfield

    I am so proud of you Jaime, it takes not only courage. but determination to live with CRPS. To see you writing a blog post when previously, due to your dyslexia, you shied away from written expression is a very proud moment for me and as always I will be with you on every step of your CRPS journey. Love you, Mum xxx

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