posts are written by Central Pain Syndrome patients. Our posts provide a sense of connection and comfort to CPS patients as well as helpful information for doctors.
Central Pain Syndrome is caused by damage to the Central Nervous System; the brain, brainstem, or spinal cord. CPS brings a lifetime of moderate to severe pain often described as burning, aching or sharp, in addition to many other symptoms.
When I finally got sober (a few moons ago) I became acutely aware of the noise in my head. Intrusive thoughts - mostly negative - would bombard me from the moment I woke up until I went to bed. And since developing CPS the noise returned in full force. Waves of negativity would wash over me as I struggled to adapt to chronic pain.
Read MoreFor the last two weeks I have been experiencing headaches which I rarely get. On Tuesday at work whilst driving I had a bizzare episode. I got stabbing pains in my chest and left shoulder. The left side of my face went numb and felt as though it had dropped. I got pins and needles in my left hand and all in all felt pretty crappy. I managed to get back to work and was taken to accident and emergency where there was talk of a possible stroke
Read MoreThere is an emotion characterised by dread, one that I have heavily experienced on my pain journey. Fear has caused me anxiety that has been difficult to shake at times. If you are newly diagnosed it is hard to sink in that CPS is a disorder that is going to affect you for the rest of your life. In most cases our symptoms worsen over time and this knowledge alone can be the instigator of fear.
Read MoreLiving with a chronic pain condition is draining, it mentally and physically takes it’s toll, yet with CPS we have learned to function with pain levels most people will never experience. When i was newly diagnosed it became clear that I was going to have to mentally manage my condition and that it was down to me to do it. As much information I read about my condition the one sure thing was that it was going no where. I had to somehow get on top of it.
Read MoreIt 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.
Read MoreI thought it may be useful to share my experience with medications. It has been three years since the pain began and only now do I feel like I've found the right medication levels. A combination that is allowing me to function from day-to-day. This is just my personal experience. I am not a medical professional.
Read MoreThe title of this post is pointing out the obvious. Indeed we are going to suffer, we have CPS. We face a life of chronic pain which can be pretty depressing in itself - but we must also live a life. We are husbands, wives, grandparents and children. Life must go on despite the pain.
Read MoreI was angry, frustrated and exhausted from dealing with undiagnosed CPS (I still am during a flare up). I thought I was going crazy. No one could comprehend the pain I was experiencing. It was bitter sweet getting a diagnosis a year on from the accident. There was relief with a diagnosis, but I was also knocked down with the reality of of a lifetime of chronic nerve pain. It was a recipe for depression and anxiety. How the hell was I supposed to manage?
Read MoreIt’s been 3 years this month since the accident that triggered central pain syndrome. It’s been a long and challenging road so far. Depression hit me hard to begin with and I struggled daily to function as I did before.
Read MoreI was first introduced to mindfulness whilst in dialectical behavioural therapy, shortly after being diagnosed with Borderline Personality Disorder. We talked a lot about being in ‘wise mind' and not being ruled by our emotions. The meditation we practiced was based around Buddhist mindfulness and redirecting thoughts.
Read MoreThere came a point, early on my CPS journey that I became self conscious of my need to talk about what I was going through with others. The problem was that no one knew how to help me so I began turning my frustrations inwards. To talk just seemed like I was complaining.
Read MoreWith CPS it became apparent that there was much more to the pain than just the pain. At the pain clinic we discussed what they called secondary pain. The fear and resentment that we all suffer from as a result of living with CPS.
Read MoreIf you were to meet me in a social setting, one thing would become apparent other than my quietness. My lack of an ability to make small talk. Unless i’m speaking on a subject i’m well versed in such as mental health, alcoholism or CPS, I struggle with general chit-chat.
Read MoreAs much as I can stay positive about my experience with CPS there are times I just get beat. It wears me down occasionally and it’s hard to see any positivity at all. Spring time can be a test of endurance with CPS. I live in the UK and this season in particular has thrown me around all over the place. I feel like I'm going rounds with the weather. It can be hot and sunny one minute then raining down hailstones the next. It's playing havoc with my nervous system.
Read MoreHow many of us can say that we really live in the moment? A lot of us have busy lives, and with CPS to deal with it seems such an elusive concept. We are rarely present in what we are doing. Even when relaxing our minds don’t seem to quiet down. A bombardment of thoughts steal away the here and now. leaving us in resentment towards the past or worrying about future events that may - or may not happen.
Read MoreAs a recovered alcoholic, now dealing with Central Pain Syndrome it is vital that I maintain good mental health. This isn't always easy. Like most people living with chronic pain I have ups and downs. Slipping back into the abyss of obsessive drinking isn't an option for me so as a means of survival I need to keep myself well. My mental wellbeing and spiritual growth matter.
Read MoreLiving along side CPS takes skills and strategies. Sometimes distractions as a temporary tool can be helpful in dealing with relentless pain. Sometimes tweaking meds help. We all have different ways to deal with it. Meditation can be an effective way to deal with the mental pressures we face.
Read MoreUnless a person is suffering from chronic pain it is hard to comprehend just how punishing it is. CPS sucks the life out of us at times and we experience the feelings of crushing defeat regularly. It often leaves us exhausted and without the motivation to do little else than just deal with the pain.
Read More
