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.
Developing CPS has placed a lot of weight on my shoulders. After all I still have my responsibilities as a husband father and employee.
It is difficult not to be hard on myself when I feel the constant stress of my situation. Some of this pressure I have created myself. There are times I have pushed to try and gain control over the monster, believing that I could somehow beat it. It never works.
Read MoreUp until just over a week ago I had been making the most of a run of lower pain levels. I felt mentally strong and was dealing with life much better as a result.
I almost forgot how dark it can get in a flare up and how quickly my mental state can sink.
Read MoreOver the last few years my wife and eldest daughter have regularly seen me curled up on the floor in pain, sink into deep depression and struggle with daily life. They have seen me in tears of frustration and hopelessness. A far cry from the man they knew before the accident.
Pain has been all consuming for myself and my family. There are times my wife has had to act as caregiver. And times our marriage has hit the rocks because of my mental state.
Read MoreThere is a link between emotional trauma and chronic pain. It's not just physical damage that can contribute to pain conditions.
It is why making peace with the past and ourselves is so important if we are going to successfully manage our pain. And as importantly we must find a way to deal with stress in the present moment. We must find a way to forgive - to let go of resentment.
Read MoreIt has been almost three years since I developed Central Pain Syndrome after a whiplash injury. And in that time myself and my family have had to deal with a lot, especially on an emotional level.
One of the biggest hurdles I faced from the beginning of the pain was the forced changes to my life. As I struggled to adapt to chronic pain that was yet to be diagnosed, things changed rapidly for me. I suddenly had limitations.
Read MoreI have been asked quite a few times: if I had the chance to go back to the night of the accident and change it, would I?
You would think it was the easiest answer in the world. You would think my answer would be YES without hesitation.
The truth is that it’s not a simple yes/no answer.
Read MoreAfter years of experimenting and collaborating with hundreds of other chronic pain patients who have Central Pain Syndrome, I have come up with a simple list of daily “to do’s” that are guaranteed to make your day at the very least as healthy as it can be.
Read MoreThe chronic illness world has its own set of terms and meanings. One is a flare-up kit and/or a survival kit. We all know how bad days can be and when it happens you better be prepared.
Everyone’s flare kit is different and it’s about what works best for you. Items can be anything from your favorite movies and books to medications to what you wear and anything in between. My top items are my heated blanket, Motrin, comfy clothes, chargers, my kindle, my Roku and my phone. These might seem all over the place, but sometimes it is hard for me to move on those days and having all of these items next to me can really help.
Read MoreAs chronic pain patients, we need extra sleep, often more than the average person, but so often “painsomnia” is what we get instead of sleep. This lack of ability to recover from a deep nights sleep only feeds further into the cycle of pain we are in and can often make us even worse. However, I’m going to set the sleep topic when it comes to resting and recovering aside for a moment and talk about an aspect most folks don’t think about when it comes to deep recovery.
Read MoreDear Doctor,
I know I may not be a typical case for you. I may not have the symptoms that you know like the back of your own hand. I might have something that you didn’t touch on a lot in medical school.
Please don’t give up on me.
Read MoreWhen you have a chronic illness, sometimes it can just seem like everyone around you is moving on with their lives while you’re just stuck in pain. This is a very real and very true experience for millions around the world who are crippled by chronic pain or a debilitating illness. When I find myself wanting to compare what I know to be true of my world with what seems to be true of someone else’s, I have to remind myself that what's happening on the outside doesn't tell the true story. We are made up of the changes taking place on the inside.
Read MoreWhen you think of pain, most people think of a burn, a broken bone, or even a scrape. I, too, think of those as painful, but I find things like the shower pressure and goosebumps incredibly excruciating. The readers here might find it strange that I say that along with the people I talk with, but it is true and it is due to my Central Pain Syndrome. I am so overly sensitized that some of the very things everyone loves I despise.
Read MoreLet’s be honest: everyone experiences pain. For some of us, that pain comes and goes more fluidly than for others. Sometimes it’s emotional pain or the pain of regret. Others experience excruciating daily physical pain. And still for everyone, the fact remains: you often don’t remember with crystal clarity the pain you’re no longer living in.
Read MoreWhen you look at me, do you see a girl who is in constant pain 24/7? A girl who some days can’t get out of bed to use the bathroom because she feels like her entire body is on fire from the inside out?
When we walk down the street or go out in public and come across someone who is rude, we as a society don’t think about how they might be going through something. I realized that I think about it now more than I had before I became sick. It’s time for society to learn how to be less judgmental and more empathetic.
Read MoreThe concept of healing has always fascinated me, and I suppose all the more since I have become painstakingly aware of my own chronic pain post-concussion. Envisioning my future without pain hasn’t been a difficult thing for me, but I would always imagine it after a sudden and miraculous event of instant physical healing, like something from a fairytale.
Read MoreWhen you are first diagnosed it can be a moment of relief because you now know that you weren’t making it up and there is no longer an “unknown” factor. The truth is it’s only a label. Just because you have a name for it doesn’t mean there is a treatment, or anything else is known about it.
Read MoreLiving with Central Pain Syndrome for the past eleven years has taught me so many things. I truly am more grateful for every ability and every breath I breathe than ever before. But somewhere along the lines as I was learning to be as kind to myself as I would be to others around me, I realized that there is more to taking care of myself than just having a daily regimen that included a oil and salt filled bubble bath with ice water before bed.
Read MoreWe all have that one friend or family member (sometimes multiple) that are always negative and continually try to bring us down. Maybe it’s a friend you have had in your life since you were little. Or maybe it’s someone in your immediate family such as a grandparent, aunt, sibling, uncle or even a parent.
Read MoreComparing yourself, your progress, or your lack of progress with other people’s is a surefire way to multiply discouragement and depression in your life. We often do it without even realizing what we’re doing. In today’s world of perceived or curated happiness thanks to how we often use the internet, it can be so easy to compare what we know to be true of our inner most darkest thoughts and pains with the polished and filtered display of our friends and acquaintances.
Read MoreI don’t know about any of you, but I think that the term victim needs to be erased and replaced with the term warrior. Victim and warrior can be considered the same depending on how you think about it. I guess you could say it’s like the glass half full or half empty notion.
I don’t blame people for using the word victim; we have been trained our whole lives to call people victims when something bad happens. When you hear the term victim it sounds like they are powerless when in reality no one is powerless.
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