New N' Needy

[Sandi]

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

[Broken_Shell]

Hi Sandra,

Welcome to the forum. It sounds like you have a lot going on in terms of both symptoms and established diagnoses. After reading your post, I think that it is certainely likely that you may also be experiencing dysautonomia in addition to the other conditions you mentioned. Furthermore, it seems that dysautonomia is often found in conjunction with some of the other diagnoses you mentioned, especially gastrointestinal problems and myofascial pain. It is certainely worth bringing this up with your doctor and getting elavuated by a physician who specializes in autonomic dysfunction. Make sure that you find out who is familiar with autonomic dysfunction because many neurologists, cardiologists, and other doctors have never even heard of this syndrome and are not knowledgable on how to diagnose or treat it.

To answer your question, YES - dysautonomia waxes and wanes, has flares, etc. For most of us, this means that our symptoms vary from day to day and even minute to minute. When I first developed dysautonomia, I had "episodes" every few weeks from which I would recover. Over the years, my condition has progressed to the point that I am disabled by symptoms on a daily basis, and I am unable to drive, work, or leave my house except to go to appointments.

I also have very bad muscle spasms and tightness in my neck, face, and head. I think that people can have a variety of "strange" symptoms from problems in this area. Have you been evaluated by a physical therapist who treats the neck and TMJ area? That beng said, a lot of other people on the forum have talked about neck and head pain and discomfort, and I don't know whether the root cause of this is the dysautonomia or a seperate myofascial problem. I have been receiving physical therapy (craniosacral therapy and Upledger myofascial work) for nearly two years. While it helps to "damage control" my neck, head, and jaw symptoms, I don't make much progress and my pain doctor, neurologist, and PT aren't sure why my body can't stop sending everything into spasm and tightening up.

The one thing that you say that makes me a little hesitant on saying that I certainely think your symptoms sound like dysautonomia is that you said that they improve with activity. I personally, as well as what I have gathered from other forum members, feel the best when I am laying down, and I have a very difficult time functioning in an upright position. Still, that doesn't mean that you don't have dysautonomia... it is a syndrome that is diverse and symptoms can vary from person to person.

I would suggest that you read through some of the information and posts on this site, as you can really learn a lot and you can compare your story to those of other members. You can search for specific symptoms using the search tool in the upper right corner.

Best wishes. Keep us posted and don't hesitate to post other questions that you have. I only joined the forum a month ago, and have found that everyone here is very supportive and a great resource.

~ Broken_Shell

[all4family]

Hi Sandi,

Welcome, though sorry for what your going through that brought you here. I certainly wouldn't consider myself a veteran seems how I just got diagnosed with this in late Jan. early Feb. But I can say I relate to how you are feeling. I also injured my neck just a few days before I became sick. although I think It had been coming on before. I read in my paperwork that what I have is autoimmune dysautonomia, because I have some antibodies. I have learned that it is common to get the dysautonomia secondary to autoimmune disease. Or maybe it is the other way around. Either way as you spend time on the board you will see a lot about autoimmune disease on here.

Your symptoms certainly ring a bell with me. I have the chest pain, and the coughing (this one drives me crazy), and many or the symptoms you describe. And mine come and go. Kind of like you say your average is bad enough, then you get to add this. Although when I first got sick 5 years ago I had daily fun! Mine was there 24/7 for the first 2 or 3 years. I am happy to say that's not the case anymore, but sometimes I get scared it will come back that way when I have a rough spot. I have learned that dysautonomia presents itself different for everyone. There is no set cookie cutter image for this. Although many similarity's each person experiences different symptoms at different times, and a lot change from day to day.

Beyond looking this up have you seen anyone about this? Or asked your current doctor about this? Although I didn't know what this was until I was diagnosed I know most doctors don't even know what it is. I am sure that there are many on here who had a harder time getting a diagnoses that can tell you which way to go. Although it took me 5 years to get diagnosed I didn't teach my doctor about it. (I didn't even know about it), I just found the right doctor who recognized what might be the problem, and did an appropriate blood test. I am sure there will be many on here to help you figure out which way to go next.

I really understand how you feel when you say people talk behind your back. I had them do it right to my face. After 5 years of beating myself up for not being able to overcome this, I still am learning to be easy on myself.

I know you will find lot's of support and caring on here, as I have.

take care, and see you around.

Suzy

[Ernie]

Hi,

I think you should get a TTT if you want a diagnosis.

[momofsara]

I agree with Ernie on the TTT for a diagnosis. They can tell a lot from the results of it. Talk to your doctor about your concerns and possible testing for you.

Hoping for the best for you and many good wishes for your Mom.

Hang in there, we are always here to help and give you support

Susan

[masumeh]

Hi and welcome to the forum,

I hope you find this place helpful; I know I did. There are many friendly ears. Experiences we share here really make a difference in coping with dysautonomia.

Your symptom description confused me a bit. I guess I had a hard time sifting through the emotional parts to get at the actual physiological events. You have trouble sleeping, eating, breathing, and have pain as well--is that right? I want to help you, if I can, just tell you whether it sounds anything like POTS. But I really am confused by the description. Can you list again, with some kind of succint, objective language?? I just have a hard time with the metaphores. It's good practice, I think, to refine and strip your symptom descriptions...easier for your doctors to get at your disease too...

My aunt has sjogrens. She got in a car accident several years ago...very bad, and had brain damage too. Later, the sjogrens appeared. I wonder if there's any relationship, since you also had a car accident, and sounds like a bad one. She is always in and out of horrible illnesses because of the sjogrens and a hystorectomy that weakened her bones and damaged her liver in the long run (like 20 years of hormone replacement pills). Anyway, I know sjogrens *****. So here's to your patience with that!

I'm gonna echo here...that the most important diagnostic tool in deciphering POTS from other diseases is the Tilt Table Test (TTT). It shows blood flow deficit to the brain.

But you can also take your heart rate laying down (lay perfectly flat and still for ten minutes), then immediately after standing, two minutes later, five minutes later, ten minutes later. You can stand for up to half and hour, since NCS appears after as much as 30 minutes. If, when you stand up, your heart rate rises more than 30 beats compared to laying down, that is the telltale sign of POTS.

Good luck with your medical struggles!

[ajw4790]

Hi,

Have you looked into whiplash after your car accident? Also, some of what you said made me think more vestibular disorders or a part of your current diagnoses that you do not often experience. Not sure from what you said that POTS fits, but a TTT is the best way to find out if it does.

[babettess]

Hi Sandi,

I hope you get some answers and feel better soon. One thing I think you should ask whatever doctor you see is to check your vitamin D level. I started prescription Vitamin D because mine was low and it didn't cure my aches and pains but it sure helped with the center of the chest crushing pain and some with my muscle aches and pains. Does the center of your chest hurt if you press on it?? Mine was soooo tender to the touch and the vitamin D really has helped with that. Research is now showing a connection between muscle aches and pains and low vitamin D levels.

Of course you have alot more going on than that.

Just a thought.

Babette

[Kitsakatsa]

Have they screened you for systemic vasculitis? Sounds a little like that with the jaw pain and all. Just wondering...

Kits