By Millie Hicklin
November is CRPS/RSD (chronic regional pain syndrome/ reflex sympathetic dystrophy) awareness month, please wear orange in support, my name is Millie Hicklin and I study ocean science and this condition affects my family, this is for my mum who has CRPS.
Imagine being in constant pain every day of your life, having a hot poker jabbed on your skin while another is like jamming your hand in a bucket of ice and leaving it there. Wanting to do things with your friends and family but your body won’t physically allow it, and smiling through the pain as no one can see or feel it but you. Many people with this condition are going through it every day, but it hasn’t been diagnosed or doctors believe it’s something else.
But also their families go through the pain with them, the amount of events, plans and birthdays we have missed because my mum has been ill, in the hospital or having an operation. The number of times my mum has been in that much pain she hasn’t wanted to live any longer and I have heard things no daughter or son should ever hear from a parent.
So what is CRPS?
This condition can be caused by injury to all areas of the body, or in some cases for no reason at all, it affects mainly arms, legs, hands and feet and frequently accompanied by swelling, colour and temperature changes to the affected areas. CRPS can also go by another name “the suicide disease” as the pain afflicted is the most severe chronic pain that exists on the McGill pain scale, it rates the pain of CRPS higher than that of people with cancer, amputees and childbirth, 90% of people affected have admitted to thinking of ending their life during the condition. CRPS can affect anyone, but generally has a higher dependency to affect women. This condition is very well known in the United States but not very well known in England, older doctors are unaware of this condition prescribing wrong treatments and diagnosing wrongly. New and younger doctors are only recently learning about this condition and slowly changing the way they treat people.
Therefore, it is vital that people become aware of this condition, and become educated to help those affected as there currently is no cure, only pain management.
Know the symptoms?
C – Changes in skin colour, temperature, excess swelling and sweating
R – Regional, usually beginning specific to one area where an injury occurred
P – Pain, often described as the most severe chronic pain that exists
S – Sensitivity, hypersensitivity to touch, sound, vibration, wind and temperature
Links to groups and for further information:
Facebook: Colour the World Orange
Facebook: United in the Fight for CRPS Awareness
Facebook: Burning Nights – CRPS Support