I came across this news story today on my Facebook. I watched the video and read the news article (click this link) and I am not ashamed to say I cried all the way through.
Having suffered CRPS for nearly 9 years now I can really feel for the journey that this young girl is embarking on especially in one so young. When I see stories like this where children are inflicted with CRPS it breaks my heart. It breaks my heart for the child that is suffering and also for their parents who have to watch their child suffer. It also makes me feel lucky that I have had a life without CRPS right up to my mid to late 30’s when this evil syndrome struck after a simple accident.
I do hope that the desensitising physiotherapy works for the young girl. Desensitisation is where you use various items to touch or brush against the affected limb with a view to making the limb less sensitive – items include feathers, warm water, different types of cloth, massage, bubbles from a hot tub, etc. You work from the least painful type of touch and slowly increase the pressure, time and type of touch. I found it to be of great benefit and still practice it now so that I don’t relapse to the stage where I cannot put anything against my foot. I still get times where I cannot bear my shoes being on any longer and mostly you will find me in comfy fluffy lined boots including in the heat of summer because “normal” shoes would hurt too much. I do wear some “normal” shoes sometimes but can only keep them on for very short periods and at a detriment to maintaining lower pain levels. Mostly every day I cannot bear the weight of my duvet on my foot if I lay on my back, I find myself making a little tent in the duvet to relieve the pressure that a duvet applies. I remember at the start of my journey, for the first couple of years. I could not have anything touch my foot, the slightest bit of pressure, or a breath of wind, or even just a stroke with a soft feather would send me into excruciating pain however using desensitisation, and continuing to use desensitisation, I find I can cope with most things now. This does not mean I am pain free, it means that the pain is at a level where I can cope. Even now there are certain things or environments that will cause my pain to increase to excruciating levels, these can include anything from a slight bump to my foot, being in a cold environment for too long, to wearing the wrong socks, and many more instances across the day that we expose our feet to.
I am a great believer in the use it or lose it phrase and will push myself as much as possible using the exercises and techniques taught to me by various physiotherapists and psychologists to keep the symptoms of CRPS as manageable as possible. It was a long painful and frustrating journey for me to get to where I am today and I live in the hope that one day I will wake up and be in remission. I sincerely hope that this young girl’s journey brings her into remission quickly so that she can regain her life and childhood.
If any of Evie’s family come across this blog, I would like to pass on my best wishes to you all and a hope that Evie recovers and goes into remission quickly.