Life with Central Sensitization Syndrome

When I first (and finally) received the correct diagnosis of Central Sensitization Syndrome at Mayo Clinic, it was made clear to me that there was no cure and that I’d spend the rest of my life learning how to cope with my condition to live more comfortably. As relieved as I was to finally have answers, every day since has been an uphill battle. Not only is the rare neurological condition responsible for numerous other chronic illnesses, it controls quite literally every aspect of my life. Most people have no idea what the condition is, let alone how it affects the brain and body. So I’m here to give you the best explanation I can as to how it affects me.

Most people have experienced the “flight or fight” response at least once in their lives— but imagine that feeling being constant. Forever on edge, drowned by anxiety and a relentless pounding heartbeat. With a dysfunctioning Central Nervous System like mine, that is what I feel like every single second of every single day, in addition to both chronic pain caused by Fibromyalgia and pain caused by a L5 herniated disc and sciatica.

When Central Sensitization occurs, the nervous system goes through a process referred to as “wind-up” and becomes regulated in a persistent state of high reactivity. Pain itself often modifies the way the Central Nervous System works, so that a patient actually becomes more sensitive and gets more pain with less provocation. Patients are not only more sensitive to things that should hurt but also to ordinary touch and pressure as well. Our pain also “echoes,” fading more slowly than in other people.

But Central Sensitization Syndrome entails much more than a generalized hypersensitivity to pain. It is characterized by an increased responsiveness to a variety of stimuli including mechanical pressure, chemical substances, hot and cold temperature, environmental and climate factors, electrical stimuli, sensory overload, stress, emotions and mental load.

My case was referred to as “more serious” than most, causing over-sensitivity and sensory issues across the board. There are so many factors that play into this. When my brain encounters loud noises and excess lighting, it’s triggered in a way that cannot be stopped. But it’s not just physiological factors, it can also be emotions— both negative and positive— that can cause my brain to become “overloaded.” Chemicals such as Bleach and WD40 throw my body into flu-like episodes. I can’t walk into a hospital without walking out sick. Most people would assume this would be immune system related, but that’s not the case. My brain is misfiring so much that I’m 10x more likely of picking up germs or illnesses that wouldn’t affect most people, even so much being more likely of developing an autoimmune disorder at some point in my life. If I were to list all of my symptoms, I’m afraid this post would never end. But to give you an idea of my worst symptoms— electric-like shocks in my brain caused by eye movement have been insufferable. While the pain from Fibromyalgia and a L5 herniated disc cause my brain to freak out, it’s also not just pain. Imagine all of your senses being amplified to the point that it causes so much distress on your brain that you can’t think straight, let alone function. Welcome to my life.

Due to pain and the constant feeling of anxiety, most patients who suffer from similar conditions are placed on medications that suppress the Central Nervous System, such as Xanax and opioid medication such as Norco. I’ve tried and been on a variety of medication throughout the years, including both of those, dating as far back as high school. While they may help temporarily, they don’t help permanently, or even enough to provide the relief I so desperately need. For me, it became a battle of turning my life over to medications that will forever change the chemistry of my brain, which can be really hard for anyone but especially for those who are still so young and have so much more life to live.

In February of this year, I met with a beyond qualified Neurologist who recommended a treatment plan that, at the time, scared the shit out of me. Due to my overactive Central Nervous System, he recommended a treatment plan regarding a medication that could essentially “reset the neurological floodgates.” This treatment plan consisted of being put in a medically induced coma in ICU over several days while Phenobarbital, one of the more stronger Barbiturates on the market, was administered into my system. There was no way of knowing how I’d wake up and what state my brain would then be in. I worried the worse— waking up feeling brain dead. But over the last 10 months, I’ve become more and more obliged to at least try this form of treatment, as every day has become harder and harder as I’ve fought to try nearly everything in hope of the slightest bit of relief.

I write this with tears rolling down my face. I’m not usually one to give up in the face of diversity, but my mental stability has taken a hit due to the constant feeling of being on edge and the hopelessness I feel being trapped inside a body with an incurable condition. I’ve felt like this for so long that I don’t remember what it feels like to be normal. To feel normal. To feel relaxed and calm. To have a normal life. It was always about putting one foot in front of the other and moving forward, despite what obstacles I faced. I even so much moved to a small mountain town to help reduce my stress levels and eliminate the factors of big city life. But living with multiple chronic illnesses, including a disastrous and debilitating Central Nervous System condition, has left me at a crossroads. I am stuck. This is not the life I wanted or imagined. I’ve already given up so many things that it’s hard to imagine what more I can do to get through the day.

With all of this being said, I’m not here for your pity or sympathy. I’m here, using my voice, to give those of you (including my own family) a glimpse into what I deal with on a daily basis. To raise awareness for those who are also suffering and can’t put into words how they feel. My mental stability has ALWAYS been strong. I have prided myself on being a force to be reckoned with when it comes to my health, but I’ve unfortunately hit a wall. Living with invisible illnesses can be really hard. From an outsider looking in, they don’t always see the pain you are in. But from an insider speaking out, IT’S THERE AND IT’S REAL— and worse than you could ever imagine. With mental health being such a crisis right now, I hope you all are kind to one another because it’s situations like mine where the hopeless give up, turning to self-medication or even ending their life. To every chronic illness warrior out there suffering day in and day out and still wake up every day to face their insufferable pain and personal hell— I have so much love, respect and admiration for you. I hope someday to feel the slightest bit of relief so I stand a better chance of living the kind of life I deserve, and not the life my conditions have made for me.