Good day everyone, I'm new to this forum but not new to chronic illness. Sounds so dramatic! And i found out about this illness completely by accident, but I am a bit afraid it fits. First may I state that I am very sorry for your pain and anguish and there sounds to plenty to go around with dysautonomia. Second I think you all deserve medals of bravery for continuing to face the enemy everyday. Kudos! Third if I could ask some questions of you veterans I would be very grateful for any direction. I found out about dysutonomia while reading about a MUGA Scan. My mom has cancer, and recently she had to have one of these tests so I was doing some research for her. On the web page there was a tiny little paragraph about heart disease, women, and dysautonomia. I read through it and was floored. I have studied a little more and watched some youtube spots. I have to say I am a bit confused about myself though. The symptoms are bang on and the "something" that I knew in my heart that was not being addressed sounds too familiar not to be one and the same. But what is confusing to me is that although I live with my regular bag of hammers everyday, this other "something" isn't an everyday thing. It is however by far the most hidious. I have hypothyroid, Addison's disease, sjogrens syndrome and have been told of Primary Biliary Cirrhosis but so far it is an non-issue meaning my liver is functioning just fine. Thanks for small favors eh?! My questions to you would be can a person suffer dysautonomia in a "flare-up" style? You see I did much better only just a few years ago. I was in an auto accident and hurt my neck and since everything has gone downhill. I have been advised by my rhuematologist that with Auto Immune diseases auto accidents and increased pain and disease are not uncommon. So to explain what symptoms I am feeling, would be my regular fatigue, some muscle pain, and my stamina suffers pretty bad, that's my regular stuff. But the new and "un-improved" me is as follows: Thankd so much for reading all this: Terrible stiff neck to the point where the muscles are hard like bone and I can hardly turn my head, this causes headaches that are uncontrolable, I ended up in the ER with the last one. My stomach refuses food period, I take two bites of something and ok then I'm full, and then it sits there for days I'm sure, yuck! I can absolutely feel that my GI tract just stops functioning, no movement no sounds and then the bloating and cramping and eventually vomiting. Nausea is a constant. Pain again is worse I am stiff and sore even in my fingers and I often have terible hand, foot and leg cramping. I also have this problem with my ribs and back. There is a terrible pain center chest, I worry about it being my heart. My breathing is affected and I feel I cannot get enough air and I develpoe a cough a dry one that produces nothing but i feel a very thick and choking mucous in my airway. Sleeping is an interesting little nightmare, fall asleep wake up, fall asleep wake up, over and over. And it's never a pleasant wake up I wake with a jolt and feel like there is a pocket of anxious sitting right on my chest, even though my mind doesn't really feel that anxious about anything. The anxiety is a veru strange and terribly powerful feeling that really is difficult to push through, very tiring. I actually don't do very well at all lying down it makes everything worse. I get tremours, my hands mostly shake so bad I avoid my bookwork (I am a book-keeper) as I cannot hold my pen and my writting looks horrid. My bookwork also suffers due to my vision, it blurrs and I have double vision. My eyesite other than age related stuff is fine accept during these flares. I just feel like I want to take a cloth and wipe away the gray fog that seems to be covering everythign I look at. i cannot tolerate bright light or razzel-dazzel flashing lights. My ears become sore and very sensative and my hearing is impaired or something. My balance is terrible when it isn't usually. My consentration, problem solving and memory are just awful, I can bring on those headaches i talked about when I have to force myself to think through it. I get very dizzy and light-headed and have to be careful with myself and i don't dare to drive. My mouth and tongue burns. And my jaw clinches shut so tight that my face aches, no matter how I try I can't get the darn thing to stop clinching, it's very tight. The gland undr my ear on my jaw often swells up and is so painful. Glands swell and get sore, under my arms, on my jaw. I crave walking. Walking is the only thing that doesn't hurt, that's safe and that seems to help un-stiffen everything. I am very dry, I thought it was sjogren's realted and may be in part but this dry is different, I drink like a camel and crave salt at the same time. Nothing new for me to be drinking a liter of water and be munching on dill pickels afte being jolted awake in the middle of the night. I also have a problem with dehydration and retention. I have 3 sizes in my closet, poor hubby he's lucky to have any room for his stuff at all! I make no plans, none, I am tired of cancelling and appologizing so i just find it easier not to make palns, it's a miserable and lonely way to live. Not to mention the talk behind my back from people who just don't get it. Oh Lord am I crazy or what this list is just to weird and to long, but this is how I've been living and I'm so darn tired of not understanding why. I know I have the listed Auto immune stuff but it has never been this out of control. And when this all hit the fan, if I do absolutley nothing but bed and rest and zero stress I can get it to go away or at least settle down enough to function again. Sorry this was so lenghty but this is a lengthy problem. I thank you so very much for reading through and will look fwd to any direction you might have. Sandra
