Dysautonomia? What on earth?

[Yeshuasdaughter]

I have been absolutely crippled by a mystery illness. I can barely get out of bed. I need a caregiver plus my daughter's help. I have become so weak, I even faint occasionally.

I spent the summer going through cancer testing. And now this autumn, I'm going through all kinds of tests on my thyroid and other endocrine stuff.

Last night by pure accident I happened upon this chart. I have most of the symptoms listed on this chart, many of which are severe to the point of needing caregivers and having a "old lady button" necklace that I wear around my neck in case I faint.

I'm not looking for armchair diagnoses, but could I have something called Dysautonomia?

I was diagnosed in the hospital with POTS this past spring. I was told it was a "Dysfunction of the Autonomic Nervous system". That sounds kind of like the word Dysautonomia. Could they be of the same animal?

If anyone has heard of Dysautonomia, is it mild, or is it a condition that can keep one in a wheelchair and make them so sick and weak that they can hardly get out of bed?

Because this is getting squirrelly in my mind. I want to ask my doctors about this, and also what about my condition made them never consider it.

Cos dang, I'm getting chills with how accurate this chart is.

 

[FayetheADHDsquirrel]

This is not a condition that I am familiar with. I am sorry to hear that you are going through all these symptoms. You are in my prayers. If you relate to the symptom list as thoroughly as it sounds, then perhaps bringing it up at your next appointment would be a good idea

 

[Yeshuasdaughter]

Here are a couple more charts I just now found online. I line up with these symptoms so well.

And it's so severe, doctors really thought I had a return lymphoma which turned up negative. Now they're testing other systems of my body to figure out what's wrong.

But I'm just looking now, realizing I could literally bring in these lists and be like, "With very few exceptions, nearly all of these are my symptoms".

 

[MildredHubble]

I'm sorry you are dealing with this on top of everything else. I think if you are experiencing all or most of the symptoms in the charts you should talk to your doctor and bring the charts with you. Maybe keep a diary or set of notes with times and duration of the symptoms you experience and maybe a 1 to 10 scale of severity. I know, its easier said than done when you feel rubbish.

It's certainly something that needs to be checked out. I experience quite a few of the symptoms in the charts too, quite a lot of them occur for people with a variety of different illnesses. So it may not be the specific illness that you have, but I think it certainly requires some testing to rule it out at the very least.

I really hope you can get some help soon and they can figure out what's going on and help you feel better again!

 

[Jumpinbare]

I have autonomic neuropathy. Autonomic neuropathy is dysautonomia, but not all dysautonomia is autonomic neuropathy. The symptoms are essentially the same, but dysautonomia can have a number of causes, while autonomic neuropathy is a progressive degradation of the autonomic nervous system.

You should see a neurologist specifically. They know what to look for to determine if this is what is affecting you.

 

[Aspychata]

Grateful that you have help to handle things, that's a big relief. Just hope your daughter is able to be there emotionally. This year really was tough. Pray those doctors quickly figure this out, and you can feel better. Did you come across any way to treat this? Maybe talking to your doctor about your idea will help them or lead them to another diagnosis. I miss all your great cooking ideas, and l pray you are able to find answers.

 

[Yeshuasdaughter]

I know it doesn't mean this is what I have. There are other concerns not on this list. But I do line up with most of the symptoms on the charts really well.

 

[Hazel_1914]

Sure sounds like what you talked about, call the doctor!

 

[vergil96]

I have autonomic neuropathy. Autonomic neuropathy is dysautonomia, but not all dysautonomia is autonomic neuropathy. The symptoms are essentially the same, but dysautonomia can have a number of causes, while autonomic neuropathy is a progressive degradation of the autonomic nervous system.

You should see a neurologist specifically. They know what to look for to determine if this is what is affecting you.

I have that "other" non-neuropathic kind apparently, but I don't know a lot about this condition. It's not harmful, but it's annoying and tiring. It causes a number of issues on a daily basis.

I sweat a lot and have hot flushes, but I don't know if it's not hormonal. They are annoying. I have usually low BP and heart rate, but sometimes my heart rate soars, because I got up too quickly or did too much just after waking up or something like that. It requires pacing myself and that takes a lot of effort. Nausea, vomiting, IBS. Allergies - yes (although I wouldn't say it's an element of it nor was it said it is). Fatigue, brain fog, migraines, vertigo, fainting, lightheadedness - all of that yes. Sensitivity to light - of course yes. Sleep issues.

So many issues resulting from the body struggling to regulate, although the most significant one is the blood pressure and heart rate and the diagnosis was made based on that. And at least for me it's more annoying and additional effort than something dangerous.

 

[SusanLR]

Do you have difficulty walking and keeping your balance?

I have Multiple System Atrophy. A neurodegenerative disorder which results in whole body dysautonomia. Walking problems was my first symptom.
The best way to find out what is causing the autonomic nervous system failures is to see a neurologist as pure dysautonomia originates from the brain.
It may not be what you have, but only a neurologist can diagnose for sure. It is a very specialized area.

Bless. May you find the answers.

 

[Alexej]

Bless. May you find the answers.

@Yeshuasdaughter - Amen - May light come into this situation

 

[AspieChris]

There’s a whole list of diseases that are only recently being discovered as being the result of auto ammune diseases. Things like type 2 diabetes, Crohn’s disease, psoriasis, etc. The immune system malfunctions and attacks the body, causing ailments that come with a terrible list of symptoms. It’s possible that you’re experiencing an attack on your nervous system by your immune system, regardless of the specific diagnosis.

Any chance your solution could be to jump past a diagnosis and go to treatment? The “whole food, plant based” movement has had excellent success with treating all manner of autoimmune disorders from cancer to fibromyalgia and diabetes.

I’M NOT PREACHING, so please nobody attack me. The whole food, plant based diet is simple, cheap, and requires no doctors or medication. It’s only eating vegetables, fruits, nuts, potatoes, etc, in their whole and unprocessed form. No meat or dairy products. AND NO COUNTING CALORIES , CARBS, or anything else. I haven’t done it because I love meat, so I’m a hypocrite for suggesting it. But the documentaries are astonishing. AND…. You would not need a doctor, medication, or therapy. AND it’s cheaper than eating ‘normal’ food. AND if you don’t get better…. just quit.

Only a suggestion. Not medical advice. But I have seen it work with a family member and a co-worker. They both got off all of their prescriptions and lost weight.

 

[Yeshuasdaughter]

There’s a whole list of diseases that are only recently being discovered as being the result of auto ammune diseases. Things like type 2 diabetes, Crohn’s disease, psoriasis, etc. The immune system malfunctions and attacks the body, causing ailments that come with a terrible list of symptoms. It’s possible that you’re experiencing an attack on your nervous system by your immune system, regardless of the specific diagnosis.

Any chance your solution could be to jump past a diagnosis and go to treatment? The “whole food, plant based” movement has had excellent success with treating all manner of autoimmune disorders from cancer to fibromyalgia and diabetes.

I’M NOT PREACHING, so please nobody attack me. The whole food, plant based diet is simple, cheap, and requires no doctors or medication. It’s only eating vegetables, fruits, nuts, potatoes, etc, in their whole and unprocessed form. No meat or dairy products. AND NO COUNTING CALORIES , CARBS, or anything else. I haven’t done it because I love meat, so I’m a hypocrite for suggesting it. But the documentaries are astonishing. AND…. You would not need a doctor, medication, or therapy. AND it’s cheaper than eating ‘normal’ food. AND if you don’t get better…. just quit.

Only a suggestion. Not medical advice. But I have seen it work with a family member and a co-worker. They both got off all of their prescriptions and lost weight.

Oh I don't think you're preaching at all. I am an herbalist and I eat things my ancestors would have recognized as food.

I forage for some of my own food and medicine, making tinctures and pills for some of my symptoms. And also I take a long list of supplements from my primary care doc, who is a naturopathic doctor. And I find great relief.

But there is something doctors know is wrong with me, that supplements and also standard medicine isn't touching. And they're sending me from specialist to specialist to find it out.

 

[RemyZee]

Hope you feel better real soon.