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Central pain syndrome

I never imagined that by the time the triplets began pre school that I would have gone through such a life changing event. One that has now affected every aspect of my life.

It has always been my main priority to take care of my family. With Stacey unable to work as a full time stay at home mum. I felt it my duty to be a good example to my daughters of man who works hard to provide for his family. And it feels like that rug has been pulled from under my feet. And il be honest, I’ve really struggled this year with the changes.

It’s difficult to get my head around that physically I am fit. Other than some wear and tear to my lower spine every single blood test and MRI scan has come back clear for any evidence of structural damage that could be creating widespread nerve pain.

It was suspected last year that the problem was centred in my central nervous system, so the tests were all a process of elimination to reach a diagnosis of Central pain syndrome. In simple terms I have haywire pain signals being sent within my spinal column, brain stem and brain. As a result of this shake up, probably caused by a car accident last year, my brain is now getting good at creating pain. And because my central nervous system is no longer functioning as it should it is in a constant state of wind up.

The advice from the pain clinic is to become my own advocate in learning about my condition. I’ve now accepted that it’s permanent and it’s down to me to find ways to manage the pain through rest, meds that work to slow down the signals in my nervous system (the strongest pain killers dont touch it) and mental management which I do my best to practice daily with non contemplative meditation. Not getting overwhelmed with negative emotions is vital. Stress can cause pain flare ups as well as physical activity.

There is currently no cure for central pain syndrome, although research is making slow discoveries around the complex condition. My case has now been accepted by a specialist neurological unit in Bristol, unfortunately I have a 7 month wait for my first appointment. Other than the group I have found on social media I am on my own with it.

Its put me out of work and caused all sorts of problems this year at home. The fatigue is difficult to deal with, I now sleep in the day just to give my nervous system a chance to calm down. The pain is widespread from my face to my lower back and hips. There are constant electric currents running through my feet which makes walking painful. I struggle to concentrate because I am in constant vigilance and awareness of what my body is doing. I have been told it will take years to get a handle on it, and in that time the pain will still be evolving.

I’m not writing this to complain. It is however a part of my life now that as a parent I have to adjust to and not become consummed by, which is no easy feat. I don’t want my limitations to stop me being a good dad. I’m determined to do as much as I can, and to stay mentally present each day for my family.