Living Beyond Pain; Caitlyn's fight against CRPS

Caitlyn had a horse riding accident in March of 2010 during her final year of high school. It should have been a simple recovery but it was far from that. She was diagnosed with a neurological dysfunction called Complex Regional Pain Syndrome (CRPS) along with Fibromyalgia 14 years ago after a long battle during the early stages of her diagnosis. Her life has never been the same since and she suffers with extreme pain every day.

CRPS is a condition that is associated with the imbalance and malfunction of the autonomic nervous system. It generally occurs as the result of some minor event, such as an injury or a surgery, that is the tipping point that brings the patient’s body over the edge. Medically speaking, it is the most painful disease known to man – rating higher than both childbirth and amputation on the McGill Pain Index. Many people, including Caitlyn, who have CRPS describe it as feeling like they are literally being burned alive.

Fibromyalgia is a condition that causes the patient to experience chronic pain affecting the entire body that may “jump” from area to area, along with severe, chronic fatigue. There are many unique and complex characteristics surrounding fibromyalgia. These make it one of the most difficult, challenging, and complicated conditions to work with and to suffer from.

Before the accident, Caitlyn was a normal, fit and healthy teenager, and a successful dressage rider with hopes of qualifying for the Olympics. Her injuries meant that she could not attend High School in a full capacity for her final year. Her social and sporting life came crashing down around her and she fell into a depression which she to this day still suffers with. The pain she has been experiencing since that day has led her to several suicide attempts and she has recently again voiced her concerns about “the rest of her life” if she can’t find a more pain-free version.

Caitlyn says “Living with CRPS and Fibromyalgia is all-consuming. It takes over every part of your life and every decision you make has to be carefully thought out so as not to “flare” the pain even more. It constantly feels like my hip and leg are on fire, and in the last couple of years the pain has spread into both of my arms and shoulders. It “jumps around” a lot, so I am constantly feeling pain in “new” areas. I experience excruciating “lightning bolt” type pains that come and go and cause my entire body to tense which is leaving me exhausted and weak, as well as crushing pains in my legs and arms that leaves me unable to move them for sometimes weeks at a time. I suffer from extreme chronic fatigue and also muscle weakness and cold outer extremities along with a long list of daily symptoms. I struggle with showering and doing my hair/makeup and have had to rely on a lot of assistance and having “big days out” are just not a reality for me due to the amount of pain and fatigue it causes. I don't remember what it feels like to be pain-free!"

We, as her family and friends, are seeking the community’s help to cover the cost of an effective 12 Week Neurologic Rehabilitation program at the NeuroSolution Center in the USA that will put an end to the everyday excruciating pain. This treatment is not available in Australia, and costs include the treatment plan, flights and accomodation/living expenses for three months.

Caitlyn says: “I have now been suffering with this extreme pain and all of the nasty side effects for nearly 15 years, and at 31 years old I am tired. I am tired of fighting, I am tired of being curled up in a ball screaming in pain, I am tired of allowing it to control my life and steal my happiness. I just want to experience a pain free life again and I truly believe that The NeuroSolution Center is my last hope. The cost for getting both myself and my carer to the US is large, but with the help of my friends and family it may just be possible. We are looking at heading over in the first half of 2025 if we can raise the funds required. I feel ashamed that I need to ask for financial help, but there is no way that we can get there without the help. So thank you, to anyone who is able to help in any way!”.

Thank you for taking the time to read Caitlyn’s story. Any support (whether that be donating or sharing) that you can offer would be greatly appreciated. We all want her quality of life back so that she can truly smile again, be pain free and get back to being herself!