Doctors Think Your Being Overly-anxious And Over-reacting!?

[Troy]

This seems to be a re-occurring theme in my life, whenever I mention those more uncommon symptoms to doctors they misinterpret it as me being overly anxious simply because they fail to understand it. They look at you as if your an anxious person who mentions every little quirk in their body making a mountain out of a molehill.

I absolutely hate it when a doctor says "you should try not to dwell on it or find something else to keep you busy" as if I'm experiencing these symptoms because I'm over thinking in some way, that's absolute garbage. I don't suffer from anxiety and nor do I have any type of panic disorder and its not like I sit at home all day staring at the walls and thinking about my symptoms, for gods sake Ive been living with this for 10 years Ive learned to adapt and move beyond dwelling on it. The only reason I mention my uncommon symptoms to doctors is because they are the only remaining symptoms that cause me the most discomfort....

The unfortunate thing is I have loads of symptoms that just don't fit the text book definition of Dysautonomia, the latest one is Nocturnal Dystonias where I find myself constantly waking up through out the night in painfully contorted positions and finding my neck and jaw muscles locked up and stiff, I find that whenever I try to move my neck back to a normal position I get a very loud high pitch cracking sound in my neck and jaw followed my severe headaches, same thing happens to my neck whenever my POTS symptoms flare up or whenever I have an adverse reaction to medications, food and other chemicals. Of course when I mention this to my family doctor and the physiotherapist they both tell me they've never heard anything like it and that its probably stress related and I'm over thinking it or I might have Fibromyalgia, which I know for a fact that I don't.

I have a feeling that my neck problems and the deterioration occurring in my joints have some sort of a neurological basis, it feels the same as restless leg syndrome except its in my neck, and the fact that the lock ups, the loud cracks and and stiffness only occur directly as a result of adverse reactions, symptoms flaring up or sleep, but no one will take me seriously because they have never heard of it.

So how do you deal with the medical world when trying to find answers for your more uncommon symptoms without being labeled as a anxious person, the worst part is once they stop taking you seriously and wrongfully label you for symptoms that are in fact of a serious nature, it just stops any progress in finding help and you have to quietly suffer with it most likely for the rest of your life.

[firewatcher]

Unfortunately, you are at the top of the knowledge threshold with your specific ANS dysfunction. I doubt there are more than one or two physicians in the world who would even be able to give you more information than you already know. With ALL of us, we have a heightened sensitivity to what is going on inside our bodies. There is no stable, automatic response that we can take for granted or ignore. Each of us respond to "normal" circumstances in abnormal ways and very little of it is understood. You probably aren't OVERreacting, you are just noticing, but since they have no answers you are left to deal with it.

I can't tell you how many times I've heard: " well, it isn't normal for anyone else, but it MUST be normal for you......."

[Noreen]

Unfortunately, you are at the top of the knowledge threshold with your specific ANS dysfunction.

I can't tell you how many times I've heard: " well, it isn't normal for anyone else, but it MUST be normal for you......."

At least that is an honest response.

Being given an answer that it is anxiety or another dx rather than listening to the patient and validating her concerns and experiences is half baked medicine at best. Especially at they are not giving her treatment options.

[futurehope]

A common response I get from a physician who doesn't know.........SILENCE.

I've come to the conclusion that there is a LOT that the medical people do not understand.

In your case, I suspect interacting with the right kind of specialist might help. But, who can that be?

Do not stop looking or trying to find the right doctor to help you. God bless!

[Birdlady]

The answer that I despise more than anything..."I've never seen or heard that before". This response would be okay if they were ADMITTING that they didn't know, but when they say that they are actually inferring that since they've never heard or seen it, that it can't be true!! Right...because you are this all-knowing being. Give me a break. If I've never seen a red car before, it doesn't mean red cars don't exist!

[lieze]

I feel like I am both of these things.

I think you have to experience this stuff to understand it.

Apparently all my dad's sisters "lost their marbles" at 40.

Well come to find out just from what my mom is saying it sounds at least like the one has the same feelings that I do that her heart will stop beating. What on earth causes us suddenly to feel all of our body processes?

What transition does our brain make that suddenly we are so self aware that we can feel every single heart beat and if we don't mechanically breathe we just stop? What on earth is going on with this and then the extreme food allergies. Now with her she was having to soak graham crackers in water to eat them. Yeah anyone would think that diet was strange.

I think we need to be studied more. Something is going on with us.

I'm not sure they have figured it out yet.

[Guest humanb4monitor]

I get aweful, slanderous things written in my file when I know more than loser doctors.

EGO doctors.

I get hugs from docs who LOVE their patients to be wise because then we are a TEAM.

GO TEAM

[Troy]

I agree with you all, I've also had the silent treatment and the "your very different", or "Ive never heard of that before" and even the unfair statements and their misdiagnosis being documented into my files. Ive had to change doctors several times after finding out the type of information contained in my files. I've even had to report doctors and file complaints after several had brushed me off as just having anxiety and one totally even dismissed my Dysautonomia and the reports I showed them from My Neurologist and Autonomic specialist. Its so ironic that whilst they claim anxiety and stress is the primary cause of my symptoms it is them that is in fact causing me the greatest anxiety and stress with their ignorance, arrogance and stupidity.

[scarfgirl]

The unfortunate thing is I have loads of symptoms that just don't fit the text book definition of Dysautonomia, the latest one is Nocturnal Dystonias where I find myself constantly waking up through out the night in painfully contorted positions and finding my neck and jaw muscles locked up and stiff, I find that whenever I try to move my neck back to a normal position I get a very loud high pitch cracking sound in my neck and jaw followed my severe headaches, same thing happens to my neck whenever my POTS symptoms flare up or whenever I have an adverse reaction to medications, food and other chemicals.

I had a similar situation to this, except it was shoulders as well as neck and jaw. I started taking a muscle relaxer (Soma) before bed and slept with a back brace on and a mouth guard. I have no clue if that would possibly help you or not, but it did wonders for me. I still have to use the mouth guard every night, but the rest I usually go without now.

[Guest humanb4monitor]

I think that DEER got their:

"deer in headlights look" from lame doctors!!

[Dizzysillyak]

Endure,

I'm sure most of us can relate to this. I have to say though, that I've been much more impressed with my doctors level of compassion and understanding since I went on this health kick and certainly since I started walking normally ... I think that surprised everyone ... My main GP is an integrative doctor too though so that's been a huge relief.

on the dystonia, I have a freind at www.glutenfreeandbeyond.org who has this. Her name there is Swuzly and she may be able to help you. She's a wealth of knowledge on many things but especially dystonia.

[Dizzysillyak]

I'd forgotten why I clicked on this ... has anyone else noticed that when they talk for more than a few minutes their brain goes dead and their voice gets shrill ? I get winded and mentally fatigued after a few minutes ... I was thinking that this may be why many people think that I'm anxious. I guess I am but it's only because I'm trying to breath, think and talk at the same time ... This is all better when I'm laying down versus when I'm standing up of course ... but I'm still getting winded easily from talking ... anyone else ?

[Troy]

I'd forgotten why I clicked on this ... has anyone else noticed that when they talk for more than a few minutes their brain goes dead and their voice gets shrill ? I get winded and mentally fatigued after a few minutes ... I was thinking that this may be why many people think that I'm anxious. I guess I am but it's only because I'm trying to breath, think and talk at the same time ... This is all better when I'm laying down versus when I'm standing up of course ... but I'm still getting winded easily from talking ... anyone else ?

That is so true, we get misunderstood for so many things, there have been times when I have been perceived as anxious for simply writing down the things I wanted to tell the doctor cause of how forgetful I have become and my poor concentration.

The worst one is when you consult a doctor who seems like they are in a hurry and rushing the consultation without giving you much of a chance to talk so then you decide if you want to be able to express your situation in that short remaining time you need to fast talk to get your point across but then when you start talking fast they look at you like your having nervous breakdown and you feel like telling them the only reason your talking fast is to cram all the information in there because they are making you rush things with their impatient, rude, arrogant attitude and for stealing your time.

[Dizzysillyak]

I'm at the point where I'm apologizing for being such a complicated patient. I had a list of 26 different diagnosises being used for testing at one point. The people at the lab had to guess which ones to use ...

I wonder how many of us fit into this category ...

BTW. Swuzly at GFAB is great resource for dystonia and may be able to tell you which nutrients you may be lacking in too. She may have something written up already too ..

[Troy]

BTW. Swuzly at GFAB is great resource for dystonia and may be able to tell you which nutrients you may be lacking in too. She may have something written up already too ..

Oops.. I forgot to thank you for that helpful link, it is much appreciated, thanks

[Maxine]

Dana----------------------so true. If they have never heard about it----therefore it must not exist. BULLROAR!

The ANS controls how we also respond to the environment around us, and our body simply can not tolerate many of the things people without ANS dysfunction can----i.e.--------->bright lights, warm sunny days, certain chemical smells, loud noise, certain medications, certain medical tests and procedures, and many more.

This is neurologically based, and the ANS is part of our neurological wiring. It's time for the medical profession to take responsibility for their profound ignorance on the ANS, and it's functions. This is a very complex disorder, and it deserves more indepth research. Right now it's not enough, and I'm reading the same repeat medical abstracts, journals, and reports that I read in early 2001 when all this began. The same doctors are writing the same research papers----the research isn't really new, nor have they reached any real epiphanies that have shown they're any closer to the underlying causes for primary dysautonomias.

If they don't know enough about our dysautonomia/POTS, then tell us, and offer to help they best they can------------READ, LEARN, AND LISTEN TO THEIR PATIENTS! Aren't WE part of the research? Don't physicians LEARN FROM US?

Get your rear ends moving medical profession! We're tired of your insecurities affecting our wellbeing.

Maxine :0)

[Birdlady]

^ Couldn't have said it any better!