Sort Of New And Scared - Can You Talk Me Through Some Autonomic Neuropathy Fears?

[Lindz]

Hi there, I have posted recently before. I am 46 and for the past two years my life has been on the diagnosis/dysautonomia express without a great answer yet. Its funny b/c when it all started autonomic issues was the first self-diagnosis I came up with and about 40 drs later it looks like one of the finalists.

So here is my question. I have had a series of issues that point to autonomic dysfunction in connection with some type of polyneuropathy or SFN or some other neuropathy.

Despite exhaustive testing, I don't know what this is. I have CEBV but supposedly its not active now. And Lyme is always controversial.

I go back to the neuro next week and as he once said, sometimes it takes time for these things to develop, I think the picture is clearer now. But as the symptoms start piling on, I am getting more and more scared that its a) either from a really really bad cause - like paraneoplastic/cancer that we can't find - or that is really MSA in disguise.

THe last time we did an MRI and SPECT scan there was an issue with hypoperfusion but not in the MSA area.

This may not be relevant to most of you because of age, but it has me so worried. And I feel soooo yucky, like systemically yucky. Do any of you feel that way? I just feel plain sick. A lot of people with neuropathy just feel nerve pain it seems. I feel like Im dying inside and yet no one knows why.

I think it was the sort of leaky bladder today that threw me over the edge. First time. Like OMG, here it is, another horrible symptom, its not stopping, its progressing, its fatal.

Sorry, its a million train of thought questions, I am just freaking out a bit. I guess Im asking how and when did you make peace with it? Its at the point where Im so scared Im like just please nothing horrible, if I have to live with it I will, please nothing horrible. I feel like Ive been on alert for two years straight and I just want this to end, but I realize a diagnosis by my neuro is only first step, then need to go to testing center, etc. Im so very fried out and so is my family and I just want to get mentally and physically back to them.

[Guest ANCY]

Sorry you are having such a hard time right now, sounds like a lot going on... It can be very discouraging to watch your health spiral out of control.

My symptoms started about 4 years ago and like you, I was on high alert every time a new symptom cropped up. That was for the first 2 1/2 years. I finally came to accept that I would have to change my personal viewpoint of normal and stop trying to live/act as if ever thing was the same as before.

It hit me hard one time to hear a hospital Dr tell me that a drastic worsening of symptoms was probably my new "normal" but it was that statement, that moment, that helped me to accept my diagnosis. After that I began to see things through different eyes. I let go of what was and embraced my new life.

The hardest part for me was seeing my peers move on with thier lives and I'm stuck in bed unable to participate in normal activities for a person in thier 20s. Now I live to see how I can not just adapt to this illness but really live this life to the fullest.

Dysautonomia does not just affect the person who is sick the whole family suffers in different ways when someone is diagnosed. Relationships take work even when your ill. I find it crucial to recognize the hurt that my family goes through. Its hard when plans must be altered in order to accommodate chronic illness.

I get the feeling systemically ill, I've described it in similar words before. Hope you can figure things out soon! Hold on and God bless.

[kellygirl]

Hello. I am sorry you are struggling so hard right now. The year prior to being diagnosed with autonomic dysfunction I felt like something was horribly wrong with me... in fact I did feel like I was dying. I remember last Christmas putting the topper on the tree and wondering if it was going to be my last Christmas as I took stock of my physical symptoms in my head. I used to get a feeling that I was going to EXPIRE right on the spot. I had voiced my concerns to my medical doctor (I just was being plagued with symptoms of feeling like my breathing patterns was altered or different in some way,but I couldn't identify how), I felt like a dark curtain was being pulled over me and the lights were just going to go out. My medical doctor told me that it was anxiety and put me on meds for anxiety, but the feeling didn't go away. A year later I know why I was feeling that way... because my autonomic nervous system was not working correctly.

As far as handling it. I have good days and bad days and I really try to enjoy the good days. If anything.. this is teaching me grab ahold of MOMENTS and cherish them! I still do get overwhelmed and depressed when symptoms flare, but I have a good support system which I think is essential to get through this.

[angelloz]

Don't know if this will calm some of your fears..but at the early stages I was incontinent for several weeks...then it just slowly went away. I began having problems at age 50 so I understand your fears. I am beginning to think it was menopause that triggered it in some way..it would explain younger adults getting this in their teens...hormonal shifts, except when you are younger your body can fight back and recover. Just some thoughts. Hang in there, several of us older folks have these same issues. I would say nearly 6 years in things have changed, some a bit worse some a bit better. Sleeping is easier for example, less tachy too. But more pain and weakness at times. Many symptoms wax and wane.

[Mikey69]

Hi Lindz,

i am so sorry you are experiencing such unpleasant and scary symptoms right now. I really feel for you. I have been presenting with a plethora of dysautonomia symptoms for over two years now. I too self diagnosed and had it confirmed by a specialist some two years later. Please understand that i feel i am new to all of this, and i'm still coming to terms with my own problems, but i wanted to reply to see if i could perhaps help quell some of your fears.

My background is, i'm male, 46 years old and have fought with severe Fibromyalgia since age 13 and severe CFS/ME since age 22, so i was already very broken before the Dysautonomia complications began.

YOu need to understand the kind of person I am next. I'm deeply spiritual, exceptionally determined (I've always fought very hard against my body and have some amazing achievements in my life), a very high achiever, ultra relaxed about everything, laid back, etc.

All of this means i've never worried about my health, no matter how severe or scary the symptoms, and i managed all of my problems without resorting to medications. To put this into perspective, it's been proven that i am in so much pain on a daily basis that it is the equivalent of being involved in a serious car crash, or having a severe heart attack, etc. And i manage this via mediation and relaxation - no pain meds of any kind.

Two years ago things began to change rapidly, and over time, i found myself becoming concerned at first, then fearful that i was going to die. Symptoms included awful changes in consciousness that felt as though i had taken bad recreational drugs or something (not that i'd really know what this is like), crazy visual disturbances/loss of pupillary response, that would leave me seeing flashing colours of light and not being able to focus my eyes, collapsing on a daily basis (up to 8 times daily) for unknown reasons, (Turned out to be reactive hypoglycemia - my boy can't regulate insulin/blood sugar properly), loss of heart control (my heart wold suddenly go crazy - this could last for minutes, hours, days, weeks), bodywide nerve disturbances, the most awful 'atypical' IBS/vasovagal synocope that lasted some 18 months. (we thought i had bowel cancer or something), Sudden onset chronic insomnia, which i'm still battling with, problems swallowing food (comes and goes). And best of all - i was cycling one day, and realized i couldn't breathe in, so couldn't get fresh air into my body. I essentially missed two in breaths, during which time i literally couldn't breathe. Luckily for me i am super relaxed, and that's what righted the situation. I relaxed and my body righted itself, the muscles relaxed as a result and my body reset the muscles. Low and behold i could breathe again. At the time i just laughed this off as a weird 'glitch', which is what i guess it was.

Anyway, my point is over the past two years i have gone through new kinds of **** with symptoms that have even had me scared. (I'm never scared by anything). I even sorted out a will for gods sake! And considered a trip to Switzerland! Nice! :-)

I'm still struggling with much of it now, but i have done a lot of research, asked a lot of questions on here (thanks guy and gals for all of your kind replies) and have come to the following conclusions:

Dysautonomia won't kill me - it's just **** annoying and can cause v. unpleasant symptoms, which would be very scary if i allowed my fears to rule my head (i won't allow that).

If you become symptomatic accept it for what it is - remember that it is a temporary state, that it will pass and that it won't kill you. (My personal mantras). If it places you in immediate situational danger then do all you can to reduce the risks) If driving, stop driving, if at point of collapse when standing, sit/lie down, If hypoglycemic eat immediately, etc.

The main thing is - don't panic, it will make the symptoms seem worse in most cases.

Do a lot of research - learn about Dysautonomia, understand what is going on in your body and why. Knowledge is power. Once you understand what is going on/wrong you will be able to do more to manage it, reduce symptoms, etc. But more importantly, you should be able to relax more and accept it for what it is. It should help to reduce your fears (I hope).

I hope all of this makes sense? I'm not exactly 'firing on all thrusters' at the moment, but i wanted to provide my imput, as i know how scary Dysautonomia can be,

Please take good care of yourself and remember that you are not alone with this,

All my very best wishes are with you,

Mike :-)

[angelloz]

Mike, I just had to chime in and compliment your thoughtful response! Well said!

[Lindz]

OMG thank you Mike and all of you for your responses. I guess what has me on edge is that no doctor has diagnosed me yet. I was sidetracked for the past year b/c a doctor diagnosed me as having Lyme. I have since come to find out that the active Lyme was incorrect, however, I did have reactivated EBV -- could that account for this craziness?

Also, a few things. If anything I have the POTS version with increased heart rate. My blood pressure is super low all the time but no big fluctuations with standing, however, I still have the back of head, neck shoulder pain. Mine is like a burning rod is through the back of my head and my arms and upper body muscles burn. Does anyone experience it like that? I feel like I have a lot of pain issues (Fully body burning). And one of my hands is "bluer" than the other.

I also am so thrown by this head pressure and fog. Its severely distracting. I cant hold conversations without internally focusing on how weird my head feels and how this can't be normal. I also have deep eye pain and twitching eyelids as well and blurred vision.

Im sorry, reading this back it looks like I am trying to find reassurance for my symptoms. I honestly think I am going mad from this and the fact that no one is validating it. Granted I haven't been to a neuro in 18 months. Im going back next week.

I too am a deeply spiritual person. I keep trying to "give this up to God" but can't seem to stop worrying until I get some medical reassurance. And all I keep thinking is okay, another year of ruined holidays because by time I get into autonomic clinic, it will be four months and etc. etc. I am so mentally spent. I almost wish my case was clearer (like fainting, etc). b./c I would get quicker attention.

I also am pretty athletic and find that I can't do it anymore. I also lost a ton of weight, but I think mine is from worrying so much. The weight loss on a small frame (im about 120) is making my symptoms worse.

When I tell myself that is something really bad, I remind myself of two things. First, Im pretty sure I have a disposition to this. My entire youth was characterized by weird numbing and tingling- I remember my parents worrying when I was as a child and had many tachychardia incidents then and frequent bathroom visits in the night. I also had severe mitral valve prolapse which needed an open heart valve repair. And I am hypermobile. (Not sure if I have ehler danlos). I think those predispose me to this nonsense. Second, I had a strange mini flare of these symptoms in 1999 that went away. So maybe it is some lifelong autonomic problem. I think I might have mentioned I have autoimmune markers as well but no diagnosed disease. What do you think?

Thanks so much for listening. And yes angelz, he did put it really well! All of you did!.

L

[Mikey69]

Hi Angelloz,

thanks for your kind words. To be candid i was concerned i hadn't represented either myself or Dysautonomia very well. I'm having a bad day today. A 'Dyssy Day' as it were :-)

So your words are greatly appreciated :-)

[Mikey69]

Hi Lindz,

have you considered that you may have had creeping Fibromyalgia from your youth years onwards? I ask because a lot of your symptoms fit, especially the burning pains, brain fog, eye pain, tachycardia, weird numbing and tingling, etc. has this even been considered by your doctor? If not, it may be worth discussing. If so, perhaps it would be worth considering again? Epstein Barr Virus is also related to CFS/ME, so again, could be worth exploring? (As you know i have both). Certainly having Fibro and/or CFS/ME could explain most/if not all of what you describe.

I'm going to be as polite as possible here, and please do excuse my questions/comments - i'm not expecting you to reply 'in public' on this forum, or even reply to me personally, given the subject matter, but the following is something to think about:

Fibromyalgia can cause significant 'intimate' changes for women, (and some symptoms for men) so if you experience any of the following then perhaps Fibro should be looked at?

Bladder problems - overly sensitive bladder, painful bladder, frequent urination, pain urinating, cystitis symptoms, vaginal pain (aching/stabbing inside), vulvadynia, vulval pain, etc. menstruation disturbances, overly heavy or light bleeding, early or late periods, painful ovulation, etc.

You should also bear in mind that Dysautonomia is a complication of Fibromyalgia - something i have been finding over the past two years or so. In fact, some in the medical profession are now thinking that CFS and FMS could in fact be 'creeping' Dysauonomia.

I hope this additional info helps.

Oh, and you're not going mad, you are being overwhelmed by a plethora of very unpleasant symptoms, which have yet to be explained. I think we've all been there! I know i have!

i'm in the U.K. and it seems that self diagnosis is the way to go because most UK medical professionals are sadly lacking when it comes to FMS/CFS and Dysautonomia. I feel like i'm educating every health professional i see at the moment! lol!

Take good care Lindz,

Mike :-)

[statesof]

Hey Lindz hang in there, when I was first sick dysautonomia wasn't even on the table, I only got the diagnosis of POTS 3 1/2 years later when my autonomic symptoms got really bad. But when I first got sick it was like I woke up in a new body with 15 random symptoms that doctors couldn't make sense of, and it did feel like I had some disease that was slowly getting worse but over time I've developed a high tolerance for neurological symptoms, and did find some medications that helped. It really is shocking sometimes how bad I can feel yet all the tests come out fine. And yes I've had many exerperiences that made me feel like I was dying, luckily hasn't happened yet, but it's still always emotionally concerning and I don't think that part ever goes away completely. We sort of live constantly in the not knowing of what exactly is going on, or why one symptom gets worse or better. Just try and live in the day, that's all we really have anyways.

[Lindz]

Thank you! Yes, I am trying to do that one day at a time. Ive just never had an illness that mentally affected me so much. The over 2 year search in the face of deficits and symptoms that only I can see/feel and no one else can, has made me mental. My family has zero patience for me and things are crumbling. I have a current of anxiety through me at all times. I actually had a dr yesterday subtly (she thought so!) lecture me about "letting things go" and not searching so much and doing yoga, etc etc. etc. Three hour round trip waste of time.

[statesof]

Yea I think for me my anxiety disorder is just made worse by the autonomic symptoms, it's hard to not feel on edge when you mentally are trying to relax but your hr is stubbornly sitting above 100. One of the hardest parts of this illness, and I think this goes for many neurological illnesses, is it is very difficult for people who don't have it to understand it because we look fine. If a healthy person was thrown in our bodies for a day they would probably be shocked with what we go through. On another not I do find medication to be helpful, it doesn't cure my symptoms but it helps me stay in the moment.