I've never been so unsure of how my body is going to react to stress as I have been since the beginning of 2011. Having experinced everything from kidney stone issues to severe right side abdominal pain, to severe back pain & unbearable lower extremity pain, pre-syncope to double vision, demonic headaches to severe base of neck pain. Its a crap shoot which is going to be the ailment of the day and at first it was a running joke for me to see what I was going to be dealing with but now its really starting to interfere with my daily activities.
My stress load without getting into detail because its personal family issues and such is beyond the normal case load. As a result, each day I awaken with a different assault on my body to which I have to overcome in order to go about my day & should I become successful in doing so, meaning I am able to endure the pain and discomfort or extreme fatigue, balance issues etc... then my body goes for another knockout punch. Its as if someone has that VooDoo doll with the pins and I am being filmed and when they see I am being resistant to the first torture, its onto phase two. I am not a big fan of this let me tell you.
For the most part, the one symptom I have been able to overcome and pretty much ignore even though its so uncomfortable would be the chest pain that radiates down the left arm, into the left jaw and also effects the shoulder. The presure is enormous, concerning and if its your first time experiencing it, TRUST ME, its a 911 situation. I've learned as a 10 year veteran of angina, that for me the excessive pain doesnt leave any long lasting damage and all it seems to be now that I understand the nerve end of the syndrome, is a glitch in the ANS system that fires the heart muscle. So what I am experiencing is added beats, forced blood that causes uncomfortable pressure and sometimes the nerves become extremely excited causing excruciating pain. I've managed to live with this for as I said, 10 years now so that is one symptom that doesnt alarm me at all.
The lower extremity pain can be a real bastard on certain days and when the stress level for the day is maxed, even the experimental medication I am on to help control it is completely bypassed as if I had not taken it at all. Its so painful that taking a step is enough to make me want to cry to my mom. I end up walking like one of those wind up toys with the shifting legs because the normal up and down pressure of walking makes me cringe in pain and will sometimes make my eyes water. It effects everything from the knee down, all the muscles, toes, achilles, heels, ankles and has gotten so bad at times that it actually has prevented my foot/ankle from pivoting back towards me because the muscles have tightened so severely. Its something that doesnt go away by sitting, standing, sleeping, laying, hot bath, (hot water activates the nerves & makes you feel like you are cooking making it worse), walking etc... I have tried EVERYTHING. When I told my doctor that it even manages to bypass the healing capacity of the medication I am on, she can only sit there and wonder just how involved this syndrome truly is.
I have just begun to get on a more regular basis severe neck pain at the base of my neck which actually makes it extremely difficult to turn my head, I have to pivot completely from the lower back. I feel confined when this happens and days when it does if anything else piles onto the daily stress in addition to so to speak, then comes the most vicious headache ever. It goes from back to front, causes double vision and extended visual disturbances, and even feels like you have carbonation inside your skull. A very disturbing and extremely uncomfortable feeling that you cant shake no matter what your posture is and of course the more intense it gets, the tighter the neck muscles get adding to the fun. Taking anything for it is pointless, nothing works, just gotta let it run its course. Last night was one of those nights and I dealt with that bastard for almost five hours before it released its grip. I wouldnt wish it on my worst enemy. Well maybe one person.
The abdominal pain is still of unknown origin but extremely painful. I can actually hit the spot of the worst concentration of pain & cause severe nausea as well as almost setting off a pre-syncope event. I have had Cat-scans, with and without contrast, MRI's, Ultrasounds and the only thing they found, which I already had known about due to the mysterious bruising I had, was a hematoma that formed internally. Well that hematoma was a painful bastard because of its location but after it vanished, the pain in the other area was never fully diagnosed. Maybe its another hematoma forming in a more dense area that is causing a more painful out come for me, its hard to say because at current time, the tests all show that there is nothing to be concerned about. Something I have heard for 10 years from doctors here and guess what, I have something to be worried about, its called Dysautonomia! A hematoma that forms without trauma for someone that has ANS disorder quite possible has weakened veins & arteries which explains why they constantly blow my veins just drawing blood. This makes me extremely vulnerable to embolizims and thats kinda scary knowing that its like a silent killer that can happen at any time. Very comforting. Just better wait if I am in the middle of RHONJ, dont be messing with my reality TV!
The pre-syncope and syncope events are concerning but usually can be manipulated and prevented if I am able to detect the earliest signs. Alot of times I have a very distinct visual issue that causes every object I am focused on to suddenly have extremely definitive lines rather than natural blending lines with the surroundings. This is usually followed by a slight rocking sensation even though my body doesnt move, my mind is broadcasting movement, this is the stage for the spin leading up to the dark shade light which is the blackout. This you fight by excessive movement, in a safe stance. You have to recognize that you could go down so you have to brace yourself so as to not do that and start the procedure to fight it. Most times, I'd say 95% or better, I have been able to fully over come a pre-syncope event but not without consequence. It sometimes leaves me drained physically for days. I need upwards of 12 hours a day where as normally now I am an insomniac how if lucky sees three hours a night. The pre-syncope/syncope event you most cautiously have to watch is the white light and out. This one is quick and leaves you almost no time to prevent. I have had only a few and every time its defeated me. I feel something coming on but before I can react, its white light and out. This one will often get me when I am sitting down which fortunately prevents injury. My last one was during my tilt table test and had the nurse not returned me to the lying position and kept agitating me to keep me alert, I was out for sure. It hit me fast a furious and I dont remember a few minutes of the testing so perhaps I was out but according to her notes, she said I remained conscious.
The fatigue, both mental and physical is an amazing phenomenon. If you paid me to believe it was possible, I'd tell you it was bullcrap but having it happen to me now, wow, totally mindboggling. It causes your mind to become so tangled that solving simplistic problems become impossible, name recognition seems like the hardest task since SAT's, remembering what you did 30 seconds ago, man you better have survailance cameras because its amazing how lost you become. I have found the remote for the TV in the refridgerator, not the one on the kitchen, the one in the garage used for beverages only. Have had to throw away perishable items because I left them on the counter for hours forgetting I even took them out in the first place. Stuff of that nature, very scary that your mind just skips. Try doing laundry with the lid open on the washer, I can tell you, it doesnt work. This is everyday for me, numerous items misplaced, forgotten all because my mind starts to take on more than it should and begins to misfire. So much for taking amphetamines to correct it! The physical part, holy crap! I was so bad the one day that making a sandwich was a project. I had to use a butter knife to cut the sandwich in half out of fear I would cut a finger off of the sandwich holding hand with a sharp knife. It was as if I had the knife tide to the tail of a really happy dog, it was all over the place. I was shaking so much I was afraid to get near anything but paper plates. I sat there on the couch in disbelief that I was this bad off and for no really good reason. Knowing what Michael J Fox endures daily makes a believer out of you that no man is invincable. The Parkinson side of this syndrome is at its worst when the body is fatigued. My medication that controls the normal shaking I have doesnt even touch the effects that happen at this stage, like I said, its as if I have no medication whatsoever to control my symptoms.
In closing its safe to say that each person that has Dysautonomia will have a different reaction to issues than the next person. We all share similar symptoms, but not all of us have the same complexity or the same triggers, medications may work for one person and not the other etc... Its each person for themselves in finding your overall control function but in the wider spectrum of things, we all can come together to share our struggles and triumphs to help the next person deal with their issues as they travel in our shoes. Thanks for reading.
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