So I tend to be a person who keeps to himself, taking the world in one day at a time and making my own conclusions as I go along. I never really wanted anything from anyone and expected the world to comply.
As far as rare neurological disorders go, Central Pain Syndrome is one that flies well under the radar, and probably because it sounds like a 5 year old threw darts at a dart board to come up with the name. Despite being 31 and feeling like a man in his 80's due to relentless pain throughout my entire body 24 hours a day, it has started taking its toll on my sanity above all else. See I mentioned that I am a quiet person and that is how I like my life, solitary, easy, under the radar, much like this pain syndrome that I have been diagnosed with. I guess there is a point where you can only go to bed so many nights in wretched pain praying for death until you can start speaking up.
I woke up in 2009 with a stiff neck. I didn't think much of it, but after 2 weeks with no relief I decided I should at least maybe see a doctor since the pain level was very high. It felt kind of like a small knife had stabbed me on my Rhombus muscle between my shoulder blade and spine traveling up into my neck and ear with shooting pain down my arm into my hands. We started with x-rays which showed nothing, back to the drawing board. We move on to an MRI where we discovered a pinched nerve in my neck at c4 and c5. Steroid injections will be our first step I am told, we were hoping that it will reduce some of the pressure on the disc and allow it to slide back into place. Well we were hoping.
After 3 injections there was absolutely no relief and here I am hanging my head to the right like I am talking on an imaginary phone just to relieve the pain. A spinal fusion procedure was presented to me as really our only option to potentially fix this compressed nerve. With some hesitation I agreed. I was told that pro football players have this surgery and go right back onto the field, I will return to the gym with only a slight reduction in my range of motion. I lost some range of motion when turning to the right and still had a good deal of pain in my neck and shoulder area, but this was a duller pain to me, less intense, and seemed to get me up and running about 50% better than before. I had trouble in the gym lifting weights, always had a constant shooting pain down my right arm like a guitar string being plucked only it was my nerve. I had lots of trouble sleeping, my head just could not find a position to lay in that was comfortable, my neck was always stiff and if my head was elevated at all my neck would lock up. I could for the most part get through my day with mild pain and discomfort with most of my pain now increasing at night when trying to sleep due to lack of positions for my head that were comfortable.
When I signed up for this surgery there was a chance that I would be back in the surgeons office in 8-10 years with possible wear on the spine either above or below the site due to the increased strain on the discs. I was back in 4. Couldn't sleep due to pain, couldn't run anymore due to the impact, driving hurt to get in and out of the car, I started avoiding friends and family outings, had to quit 2 jobs in search of easier employment with less physical demand including taking pay cuts, and mostly I just wasn't enjoying my quality of life.
We started simple, a few different medications and some physical therapy. There are only so many times you can be told to turn your head to the left and hold for 20 seconds until you realize that this is not going to work. We went back and took a second MRI only to find that in fact we had a compressed nerve again at c6 and c7. I didn't know what to do or think. At this point I am 30 years old with a new baby girl who just turned a year old and my wife and I were just married 4 months prior to this. My options seemed pretty limited at this point and I was told that another injection would likely do nothing for me. I was presented with the option for an artificial disc replacement surgery. Apparently this was a newer procedure with better results that allowed the patient to limit their mobility loss greatly. I was terrified, but I wasn't left with many options so I agreed.
It took about 6 months for my body to start realizing that I was slowly becoming disabled. I couldn't walk without feeling pain vibrating all the way up my legs, back, and into my neck. My hands ached like they had been used all day long to crack walnuts, my back would sometimes not want to bend, my left leg would go numb, sleep was just not happening. I started waking up with arms that were completely dead, and my neck and back would feel like I had been beaten in my sleep with bats and stones. My bones would feel broken at times. I started missing work and searching for answers. Local doctors looked at me like I was crazy, they had no clue or I am assuming they thought I was trying to score pain medications since you cannot see anything and x-rays and MRI's showed that everything was fine. Tired of waiting on answers locally, we decided to travel to the Mayo Clinic in Minnesota to hopefully find answers.
It was after almost a week of testing that by process of elimination the doctors had determined that this was classified as Central Pain Syndrome or Central Sensitization. My wife and I looked at each other confused and frankly a bit angry since we were told this very casually and calmly even though they had no cure and really no real treatment options available. Pain management was really all we could do, and at that point I basically hit bottom. I started doing research and realized that there was a small community out there of patients with this Central Pain Syndrome and they shared similar stories.
My symptoms seemed to increase for a few months and now seem to taper for a few days and then spike. My nervous system is so sensitive that even a slight increase in temperature will cause me to start sweating, I spend 50% of my day in bed, I rarely ever leave my home, and I can only pick up my daughter a few times in a day. I used to bench press 325 5-10 times and now I can barely carry a pot full of water to the sink from the stove. I have fight in me and plenty of heart, but the bitter truth is that I am only a man, and a man cannot be expected to face a lion every day of his life. We have a mattress in the living room on the floor so that I can play with my daughter more often, and I am starting to need assistance from a mobility scooter if I am to do long bouts of walking such as grocery shopping or taking our daughter to the zoo. I am completing my pain management classes now, but we have seen little to no increase in my physical abilities. My wife watches our daughter almost solely, and is forced to do most of the errands that are needed to be done outside of the house. I can force myself to work around the house but I instantly start sweating profusely, my heart beats out of my chest, I am uncoordinated, and eventually either do a half ass job or I just get pissed and stop. I can do extremely light work at the pace of a snail, but that means maybe ill put some clothes in the wash machine if the basket is waste high, and I wont start it because the soap is too heavy to lift. Now I can do that whole process, but if I bend over to get the clothes out of the basket or lift the basket to washer height, my back is sore to the point of needing about a 5-10 min break. If I get the soap down from the cabinet above the washer and then lift it back to the cabinet that too hurts my back and adds another 5-10 mins of rest. I can do dishes at the sink, but I can only stand in one spot for maybe 5-10 min until my hips lock up and require about 15-20 min of rest sometimes 30 min to an hour. I can get in the car with some moderate pain in my neck and eventually my hip and back will start locking up and require a good 30 min to an hour to recover laying down once I walk in the door. Add walking around a store or standing in line somewhere, you add another at least hour of rest laying down. All in all if I get in my car and go to the grocery store parking right by the door and only walking in and get one item, that alone would require at least 1-2 hrs rest afterward to get my body back to "normal".
I don't know where this journey will take me, but I can say that I am very tired all ready. It is very hard to live a normal life, impossible to have a social life, most days hard to see myself as a good father or husband, and also hard to want to continue. I have my life and I have people to share it with and that is really all I need I suppose, but I would be lying if I said I didn't expect more. I have always considered myself a hard worker and I like to enjoy a financially stable living, but I am no longer able to work and couldn't wrap my head around the commitment if I tried right now. I actually have the opportunity to go back to school for free to finish my degree and will do so, but aside from working at home, I don't really know how to commit to a schedule for an employer since at times I am so hurt from a normal day that I may be in bed for up to 48 to sometimes 72 hrs. I just live my life from behind a computer screen now searching for answers and distractions. I wish I had some advice for people out there but unfortunately this is still very fresh to my body and mind. I wouldn't consider myself in over my head but more drowned and come back to life. I just kind of float here and let my pain levels go so high that it makes me numb to the world. Sometimes I will hold my wife's hand at night and just cry, sometimes I will hold my daughter and just cry. Sometimes I will have nights that are so intense my muscle spasms cause me so much pain I just scream until I pass out from the pain. I don't know what to expect, and I hope if anyone can take anything from my story it's that we are out here. We are waiting to be heard, waiting for a cure, waiting for answers.
