Posted in Archive, December 2020

Life alongside Complex Regional Pain Syndrome

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Complex Regional Pain Syndrome (crps) first appeared in my life back in February 2006. I was 16, in my GCSE year and had just had my appendix removed after a gruelling week on the adult inpatient ward being poked and prodded by consultants. Whilst they ummed and erred over whether or not to operate I would be given morphine injections into my thighs. A seemingly normal procedure which resulted in any semblance of normal vanishing in to the fire of nerve pain.

Around a week after discharge I was back in A&E having my leg x-rayed. Despite mine and my mother’s instance that it couldn’t be broken as I had barely walked due to the pain in it; so there’s been no fall, twist or bang to break a bone. Instead I was living in shorts unable to bare touch upon my skin, I was walking on my tip toes and every movement was agaonizing. This time I was admitted to the children’s ward after they’d established no break and the whispers of crps emerged.

Crps info

My leg deteriorated rapidly to the point it was in a fixed dystonic position (not that anyone explained that at the time) I could not bare any sort of touch and felt like I was being burned constantly. I can vividly remember one day where the pain was so bad I was screaming for them to put my leg out; my brain so convinced that it must be on fire, despite my eyes seeing otherwise. They ended up sedating me with diazepam to help.

My stay on the children’s ward was not a short one. I was there for a total of six months, studying and completing my GCSEs and undergoing intensive physio therapy. I couldn’t be more greatful to the physio team. They impressed on me the importance of desensitisation of the leg. This essentially meant running different textures up and down my leg multiple times a day to reprogram the nerves to recognise that it wasnt a painful stimuli, we used things like make up brushes, sponges etc. The turning point though was when they introduced hydrotherapy into my treatment. I would be hoisted into the pool and spend the session pretty much holding the side for dear life trying not to scream to loudly. It was traumatic and still makes me want to cry thinking back on it but I am so glad that they kept me going with it. There is no doubt in my mind that it was the best desensitisation treatment.

My leg now can bare clothing and shoes, I don’t scream out when we go over bumps in the car or if there’s a windy day blowing my clothes. For the most parts the symptoms are there but quiet, only roaring their disabiling heads when I do something foolish like walk into a table edge, or spend to long on that side at night. The Dr’s told us they were fairly certain the morphine injections were to blame and I’ve refused all leg injections since.

Part of my Dystonia treatment involves three monthly injections. In 2015 following my usual jabs I found myself at the Dr’s being diagnosed with crps once again, this time in my right shoulder. I was struggling to wear clothes and move my arm. Thankfully we knew from last time how to act and I arranged hydrotherapy straight away and started my old desensitisation routine again. I still struggle to wear a bra, it causes immense burning but I force myself to for as much of the day as I can bare. Every 12 weeks the area is injected again and I have a flare up. It’s shattering but I take comfort in knowing that the desensitisation methods bring it back to a tolerable level

There’s a lot yet to be understood about this condition but to anyone who is suffering please remember you are not alone and my facebook page inbox is always open.

Author:

I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything

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