The Annoying Symptoms List

When you get a splinter, a cut, break a bone or sprain something, there is a known level symptoms to expect from the injury with the only surprise being the location as to where it occured. This is something that is annoying to most, interferes with daily activities but for the most part we get better each day and our lives get back on track with nothing more than a story to tell someone down the road. Now picture if you had no idea what your symptom of the day was going to be and each day you woke up it was completely different, some of the symptoms being so draining to the body that you feel as though you are totally unable to function at all for the day. That would suck right? Well thats the world of alot of ANS disorders such as, Parkinsons, Chronic Fatigue Syndrome, Fibromyalgia, Neoropathys etc... just to name a few off my head. All of which have the symptoms from hell which cause the affected to wonder why they were chosen to bear the grief of such a devastating syndrome, only having a few good days a month but even those good days are trade offs they have to deal with. Symptoms are still there just tolerable for that day so what happens? You try and go back to the life you once remembered prior to all the pain and pills but the next four days you spend absolutely miserable wishing someone would push you off a cliff so you could end it all. The overall pain of over doing it can't even be explained on the normal 1-10 pain chart because anyone whos suffered the syndromes knows that days of a 9-10 happen, then you over do it, you wish to God you had that 9-10 back again. When its said you wouldnt wish it on your worst enemy, its truly an understatement, no person should have to suffer like this ever.
With all that being said and you sit there pondering all those people in your life that might have one of those syndromes I mentioned & you are feeling bad that you might have spoke ill of them behind their back because you felt they were dramatically adding to their issue, wrap your mind around this concept. Imagine someone who has the pleasure of suffering the symptoms of all the syndromes combined. Yep, a person who can totally relate to someone who just has Parkinsons & another person who just has Fibromyalgia, or another who just has Chronic Fatigue Syndrome. So as each of these persons battle their one issue and it seems as though the world is ending for them, trust them, it is with some of the harshness of the symptoms of each seperate syndrome, along comes someone with Dysautonomia. The mother of Satan without doubt. I can talk to any person within the realm of a CNS, ANS disorder and be able to relate to exactly what they are going through because I have a taste of each and everyone of the wonderful facets of the syndromes within this area of diagnosis. So when my day begins, its a roll of the dice whether or not its going to be a Parkinsons day, a Fibromyalgia day or a Chronic Fatigue Syndrome day etc... If I am really lucky, like I have been lately, I can exhibit a combination of several all together to where it over rides all my medications & essentially lays me out on the couch for many hours trying to recover as if I had been hit by lightning. Fully drained to the point where SpongeBob cartoons make sense to me. This is how my life goes now daily & as I enter new territories of how my body will attack, I am never fully surprised, just more shocked that I didnt think of it first and prepare myself. This weeks thus far is severe muscle fatigue upper extremities, so bad I cant move my hands without severe pain, writing its excruciating. I hadnt realized just how bad it was until I couldnt open a 24ounce soda bottle. The pain that went through my forearms and the lack of grip I had with both hands was utterly mind boggling to me, I felt like I was 80+ years old. This was also joined by difficulty swallowing, the glands in my neck severely swollen which would come and go through out the day, very odd indeed. Head ache beyond anything I could ever expect, for someone whos experienced about 13 headaches my entire life, this one made a believer out of me, which also I noticed my neck at the base of where the skull and neck meet, was severely painful. I had severe burning in my legs, the Fibro connection which fires out the bottoms of my feet and toes as if it was pure fire. Very uncomfortable & enough to bring tears to your eyes at times. I think I much prefer severe brain fog, short term memory loss and leg muscle issues over this one no doubt.
I woke up gasping for air, coughing, around 0500, I noticed the infamous swollen gland issue was extensive and for most of today thus far, my swallowing seems labored so eating today will be a challenge but quite possibly avoided until I feel that all is back to normal. I already suffer sleep apnea and use some pretty high settings on my BiPap, so the extra added restriction is not exactly needed today. My eyes are affected pretty badly today as well, seem cloudy & I am having trouble distinguishing colors such as difference between red & pink. Not sure whats up there but hoping eyes return to normal later today, very annoying to be visually impaired with all the other crap going on, this frustrates me the most. I am also flash sweating without any movement. Just sitting still and suddenly start sweating as if someone had me in a frying pan. A few minutes later, I need a cover so the internal tempature is wacky as well.
Its been a nightmare thus far 2011, before I was diagnosed it was just one issue at a time, now its everything all at once and its alot to deal with in that fashion. Very hard to digest the fact that your body hates the person you are. So you end up living with your arch nemesis who has control of your every movement. Very difficult concept to absorb but so much the truth when you look at it as if there is another "person" thats causing the issue. To think of it as just a system failure makes me feel like I am less than perfect and I want to just give in to it. Blaming it for whats happening, makes me want to fight it that much stronger but its hard to win a football game when the other team has your play book. As I had said in my Bucket List post, I plan on seeing my daughter turn 2 in November, then wait for her to turn three. Thats my way of dealing with this, not letting it get inside my head.
I decided to include a few of the symptoms that cause issues for someone suffering from Dysautonomia. I will most likely include some from Neurocardiogenic Syncope Syndrome as well because I had that diagnosed on Monday. Not sure how long this list will get but I am putting the ones that affect me first:
Lightheadedness
Fainting/Near Fainting (Syncope/Pre-Syncope)
Generalized weakness
Palpitations
Tremulousness
Shortness of breath
Chest discomfort and/or pain
Loss of sweating/Excessive Sweating
Bloating after meals
Nausea
Abdominal pain (Sometimes so bad it will cause syncope event if I press on it)
Diarrhea/Constipation
Bladder dysfunction (having this delight right now)
Pupillary dysfunction (yep, blurred, double, tunnel, foggy vision)
Fatigue (beyond physically, mentally not too bad most of the time)
Sleep disorders (sleep apnea ((Severe obstructive)) narcolepsy, insomnia)
Headache/Migraine (recent have only had about 13 total headaches in my life 3 this last month)
Myofascial pain (beyond words. Forearms, calves, thighs, hands severely affected)
Neuropathic pain (Peripheral Neuropathy lower extremities tested positive)
Dizziness
Tachycardia (Original reason loop monitor was implanted)
Exercise intolerance (rode a bike one day with my son, took three weeks to recover)
Intolerance to heat/cold
Feeling cold all over
Low blood pressure upon standing (NCS positive)
Cognitive impairment (good lord yes, I need to start recording stuff to recall)
Narrowing of upright pulse pressure (thats what led to my Tilt Table Test)
Cold hands (only when I feel symptomatic, my son has told me my hands turned to ice)
Chills (rare but comical when it happens, room tempature is usually 78 degrees)
Hypertension (blood pressure has scared people it was so high)
Hypotension (blood pressure so low, everyone kept asking if I felt faint, same week of high BP)
Numbness or tingling (alot of this going on even in the pelvis/groin area, elboys, fingers, legs)
Low back pain (um, herniated discs, big yes here no syndrome involved on this)
Aching neck & shoulders (this has become severe last 9 months)
Noise sensitivity (certain styles of noise make me cringe, especially bathroom fans)
Light sensitivity (severe flourecent lighting makes me walk oddly to the left, eyes get wierd)
Disequalibrium (I crash into the walls at least 30 times a week, getting used to it)
Arrhythmias (its actually been described as an added beat when I have a severe episode)
Chemical sensitivities (oh my lost 5 days over this, who, what, where, when & why)
Easily over-stimulated (if I am having a heavy symptom day, 2 things going on seem like 100)
Feeling full quickly (I eat like two bites & I am full, I call BS and just keep eating)
Feeling wired (perhaps not wired but my mind is way to alert at times, insomniac)
Food allergies/sensitivities (suddenly became allergic to seafood, slightest salt causes food binge)
Loss of appetite (I lost like 32 pounds in three weeks it was crazy)
Loss of sex drive (not proud of this one)
Muscle aches/joint pain
Polydipsia (thirst beyond belief, sometimes I am totally shocked by what I drank)
Weight gain/loss (lost alot of weight, was asked to use sodium again, gaining weight now)
Feeling detached from surroundings (could never explain this one but always felt I was alone)
Hypnic jerk (if you ever had on, its a blast. I have multiple even sitting)
Visual obstruction (had a black box blocking my view in one eye, no one could tell me why)

Due to a time limitation, i.e. getting my son from school, I'll have to stop there on symptoms. I have many more to share but I think I am going to include them in my post when they uncover the JMS/EDS syndrome connection. Thats going to be a fun one for me.
In closing I guess its safe to say that no matter what is happening to you, my theory is "someone has it worse" so I am able to overcome this daily issues and move alone in live. Yes I suffer daily, yes it suck, yes I want to lay down somewhere and just wake up when its all over but I have two small children that rely on their dad every day where as my oldest kids are self sufficient & can get on with life without having to have me over their shoulder each second. So for me its all about the energy of the little ones that gives me the boost to get going each day. I admit when I prepare to go to sleep finally, usually around 3-4 am, my last words are "Now I lay me down to sleep......" its a prayer that I feel is necessary to recite each and every night. I may never know when its my last time I am going to say it so I always want to know I did. I wont sit there and beg God to heal me, or ask why me etc... Instead, I ask that he heal all the children in the world burdened with cancer especially because its so close to my heart, I use my energy where I feel its most important. Thanks for reading. P.S. Dont be afraid to comment. Especially if you suffer from some form of ANS disorder.