Being diagnosed with Complex Regional Pain Syndrome (CRPS) is usually the first time that most people have heard of this rare, multi-system disorder that affects the musculoskeletal system, the peripheral nervous system and the central nervous system. It can take some time to come to terms with this baffling disorder that many people in the health system have never heard of and don’t fully understand.
It is reassuring to know that you are not alone, and that others are going through the same struggles, issues and even triumphs over CRPS that you are. Many have kindly agreed to share their stories with us.
Please click on the links provided to access these Personal CRPS stories.
If you would like to share your story with our CRPS community you can email it to us together with a photograph and details of your age and where you live to:
“I have reached some massive milestones which has given me so much motivation to keep going. I understand I will never have the life I had before my CRPS and I will always have pain, but it doesn’t stop me from constantly reaching to try and help myself and others.”
Shiobhan Dimond- 26
Wondering if I will ever get a decent night’s sleep again, will I ever get a healthy mind back, will my confidence ever come back to where I use to be. So many questions, no answers. Will, I ever stop having days where the slightest movement hurts like hell? Will I ever escape this depression that haunts me? I’m so over living my life like this, because it’s not a life, it’s just existing. I’m truly at the end of living my life like this, is it someone else’s turn now?
J – 49
“I retain my sense of humour, albeit a somewhat darker one. I miss my work, writing daily, my outgoing, Tiggeresque energetic self, but I also welcome this measured, more empathetic, responsive woman.”
Laura Parkhill – 55
“Hi, my name is Trev. I am 57 years young, and I spend a lot of time lurking around CRPS sites and blogs pages searching for remedies and treatments, whether it be natural or pharmaceutical. This is the first time that I have ever written to anybody about it.”
Trev Hogan – 57
“I am a wife, a mother, a mother-in-law, grandmother, a great grandmother, daughter, sister, friend and the list goes on. I was involved in many community activities and had lots of hobbies which kept me fairly active.”
“I am lucky to have a partner of 13 years that I love with all my heart. I also have my mum and my step-father, all who love me for who I am, even when I feel self conscious, I act out because of my medications, I am too tired for socialising, and when I am downright in pain and need a hug, a free meal or someone to spoon me as I sob.”