Cut loose
It is as though I have now been left to my own devices with CPS. Initially I had a nine month wait to see an NHS neurologist about the phantom pain triggered by a car accident. In that time I saw a private neurologist who suspected MS due to my symptoms, but all the MRI scans came back as normal.
It was the NHS neurologist who diagnosed me with CPS as a result of eliminating other illness. He also referred me for a neuropsychological assessment to look into the memory loss and cognitive issues I was experiencing since the pain began.
The result of that assessment was a diagnosis of functional cognitive disorder. The memory loss and cognitive issues were a direct result of having chronic nerve pain. It was also affecting my speech. After that diagnosis they no longer felt they needed to see me again and I was signed off by the brain injury unit. My neurologist also felt there was no need to see me again so it was now down to finding medications that would help me function.
It felt as though I had been cut loose. I was alone with my illness and It made me feel quite anxious. It was now up to me and me alone to learn to live with CPS. Thankfully I have a very understanding GP who will listen to me and allows me to decide on the best medication. Being signed off by my doctors caused me to go in on myself. It was frightening to think that I was on my own, dealing with a monster twice the size of me.
I was overwhelmed with feelings of dread and resentment but I had no other choice but to face my situation. I needed to see my illness as a challenge, rather than a chronic pain problem. A change in attitude was necessary for my mental health.
Up until this point I have survived the worst day’s of my life. I have dealt with Borderline Personality Disorder, alcoholism and depression. There were day’s I was ready to end it all but I somehow pulled through. I had to overcome the trauma of CPS. The sense of community with online support was vital. I found myself in a lonely place once the neurologist visits and pain clinic had ended.
It was in those online groups I found out about different medications and new ways to cope. Everybody had different symptoms from different causes of their CPS but we all share a common problem. We we're all in the same boat, living with chronic pain. The Central Pain Syndrome Foundation and fb group have been a life-line during the darker days. There is round the clock support where no-one else understands what we are going through.
Lately I have been coping quite well. The warmer summer months are kinder on my body, and a much needed break staying with my wife's family has allowed me to relax a little more due to the extra help with the triplets. But I stay close to my online tribe and volunteer work with the Central Pain Syndrome Foundation keeps me occupied. And I'm the kind of guy that needs to keep as busy as my body will let me.
You don't have to be alone. We are always available to support you wherever you are. We are all walking the same journey and with care and a sense of duty to each other, we can get through the worst of days together.
Questions or comments? Join the CPS patient conversation at our closed Facebook group or email us at info@cps.foundation