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Pistol

open letter to physicians of dysautonomia patients

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Dear physician - I have been diagnosed with dysautonomia. My blood work, EKG, CT scans and physical assessment may be normal and nothing may give you cause for concern. I may appear to be a perfectly healthy individual with no obvious reason for concern to you. However - I am very ill. All of the symptoms I am describing to you are real and I am suffering on a daily basis from them, some days may be better than others.  Please do not dismiss me. I may appear to have symptoms that are similar to those of anxiety but please understand: they are real and they are caused by my dysautonomia.  In addition to that please be aware that these symptoms can be quite scary - if you had them you would be scared too. I need you to listen to me and to take me serious, I would not be in your office if I did not need your advice. I do not expect you to know all of the answers but I do expect you to try your best to help me figure out a way to function and to limit the effects of these symptoms on my daily life.  My illness may be invisible - but it is present in every minute of my life. Thank you for trying to improve the quality of my life.   

 

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I really Appreciate this letter.   I recently started having symptoms consistent with DysAutonomia.  I have been dealing with it for 4 months now.  I went to a doctor at Month 1, after almost passing out after swimming.  My symptoms are worst after long periods of standing or exercising, I think this is Probably close to NMS or NMH.   I am pre-Syncope.  Well, I go to my doctor and told him my symptoms.  I told him about my vertigo, light headness, severe fatigue, always feeling tired in the mornings, and muscle ache.  I also told him that I normally ran 5 miles a day ;(, I miss those days, and now I have trouble with grocery shopping.   He perform a quick check up and then told me that I was depressed.  I told him no way I am depressed.  I was under a little of stress, so I admitted that, but I did not feel depressed.   My inability to exercise was not because I did not want to, but lack of energy and feeling poorly. 

I told him I wanted to investigate physical Symptoms, as well as his recommendations of treating this from a mental aspect.  He relented and got a thyroid panel  I trusted his judgement, so i fill the prescriptions.  I took the pills for 5 days.  I was still adjusting to life with these symptoms and the pills, lexapro, just made everything worst.   I reached out to his office and said I wanted to do some basic blood test.  The nurse told me that I wasn't sick and needed to give it a month on the medicine.  I told her >.....NO i wanted to do physical testing and that I did not feel depressed.  I told her the only thing I was depressed about was their lack of desire to treat my physical symptoms.   Finally she said the doctor agreed to let me do a CBC panel.  She said it was only to "make me feel better", and "to help me sleep at night".  She openly mocked my desire for help.  I got off the phone in tears and steaming mad.  I was devastated by what was going on and her response and how drastically my life had changed. 

So I immediately started looking for a new doctor.  It took over a month.... this really sucked not knowing what was going on and being in the dark.  Finally I got a new doctor.  After my initial conversations with my new doctor, he order 6 bloods test and an EKG.  Then he recommended an echocardiogram.   I cannot express how much relief and how grateful I am for my doctor.  He was open to what I had to say and listened to my symptoms and took actions to diagnose it.  When I asked him about the other doctor he said that this was obviously not a mental issues, especially because I was able to run 5 miles before getting sick to not being able to walk to the back of walmart without a break.  

I am in my 30s and am in good shape.  This has caused every doctor I see to automatically doubt my conditions.   I had hypotension at the stress test that caused them to call the doctor from the hospital.  I told them before the test how scared I was of doing it, but the nurses just rolled their eyes... I then tried to tell them I was struggling and they just said to keep going, at least make it to 12 minutes.   that was when I experienced over a 60 point drop in blood pressure, while jogging.  This was one of the most painful experiences of my life.  I felt like throwing up, severe fatigue, vertigo, and pain all over my body.   The nurse just kept saying... you must be diabetic....:(

If you have symptoms that you think are physical and a doctor dismisses them as mental you have to be your own advocate.  You have to stand up and speak for yourself.  Don't let the doctor push you around or ignore how you feel.  I wanted to trust my doctor but he wasted almost 2 months of my life with no progress to a diagnosis and hundreds of dollars.   I am devastated about having this disease, but I am so grateful to having a doctor's office that will listen to me and help me.

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Many patients forget that there is a fiduciary relationship between patient and doctor. You may be paying a copay that is a small fraction to what your insurance company is coughing up to your specialists and so you don't consider how much per hour these people are getting. If you sense that the doctor is being unprofessional for what they are being paid then speak up immediately, tell them you expect better care. My own primary told me that most doctors are sphincters (not the word he used) and that I should dump the bad ones and never go back. It was a very enlightening moment for me because though it did take the wind out of the sails with giving respect to all doctors, it certainly made me step back and consider who was worthy of a big payout from my insurer and who wasn't because everyone of us is a co-morbidity billing, financial jackpot to our doctors. They make a LOT OF MONEY off of us. I dumped my bad doctors. I'm not going back to mediocrity, sneering faces, mocking laughs, dead-ending, unimaginative thinking, and lack luster performance or advice in maintaining and improving my health and life. I have now a handful of doctors that mean the world to me because they know what's wrong and they take care of me with a high level of professionalism and compassion. 

Fire your garbage doctors. Don't go back.

 

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I treat every one of them like they are on a job interview and I decide if they get the job of managing that part of my care. Of course, I am the project manager, so I can make adjustments to my project team as needed if one is underperforming. 

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I respect most doctors ,but the most ironic thing about their job is that they will never know what its like to be sick like their patients ....They will never feel the diseases and sicknesses they treat....

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I have a longstanding history of depression and anxiety.  It was hard to get doctors to take me seriously when I was looking for my POTS diagnosis, but I kept pushing.  Most seemed eager to write my symptoms off as anxiety.   But I have over 30 years of experience with anxiety; I knew it wasn't anxiety.  I wound up keeping the weirder symptoms to myself and telling them only about the things I thought they could measure or see, because I knew they wouldn't believe me if I told them everything. 

Even my POTS specialist doesn't believe that I had a weird reaction to mestinon (feeling drugged), and her staff members have treated me like I am a head case when I have called with questions.  (I guess I could understand that more if I called there crying or hysterical, but I haven't.)  Apparently I'm supposed to know everything about POTS already, even though I was just diagnosed in December.  But I can't exactly change providers, because there is no one else around here who knows as much about POTS.

It would be easier to deal with the POTS if I didn't have depression and anxiety, but you can't choose your illnesses.  I'm sick and tired of doctors and family members not listening or not believing me.  Many family members have horrible advice to give out as well: "go for walks," "if your energy is low, drink coffee or take caffeine pills,"  or--my perennial favorite--"just try," or "try harder."   OMG, you're so right!!  Why didn't I think of that?  :rolleyes:   :angry:

I've been told that I'm very good at writing and communicating verbally, but so often I feel like I'm shouting at deaf people.  I can tell people how I feel, but no matter how articulate I am, I can't make them feel it. 

I can't even get them to listen

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On 3/16/2018 at 6:37 PM, Mistri_The_Squirrel said:

I've been told that I'm very good at writing and communicating verbally, but so often I feel like I'm shouting at deaf people.  I can tell people how I feel, but no matter how articulate I am, I can't make them feel it. 

I can't even get them to listen

Tell other people.

Don't let this stop you. If the people you know won't listen then tell other folks. Turn your skill set into advocacy for others. Make a blog, a forum, a diary online, a youtube channel with a vlog, anything that is an expression of you that tells your story. People will find your work and link to you and say--"Here is someone just like me, I'm not alone." Everyone's voice matters. Personal relationships can be very complex and because of it people will be more or less responsive to your message. Yet others are willing to listen. Take your voice to them and in your own words, by your own way, and let them know you matter, your words matter and you are very real in what you feel and that you don't need anyone's validation on what you do towards healing. You are proceeding at a pace that is set forth by your doctors and they will change it when they feel you are ready but not before that point. 

 

 

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A good doctor can be hard to find. You don't realize this until you actually get sick and need a good doctor or team of doctors on your side. I had to switch doctors recently for primary care, and I'm so glad. My new doctor is amazing and understands things so much better. It's so nice to feel like she's on side.  

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On 3/18/2018 at 12:20 PM, WinterSown said:

Tell other people.

Don't let this stop you. If the people you know won't listen then tell other folks. Turn your skill set into advocacy for others. Make a blog, a forum, a diary online, a youtube channel with a vlog, anything that is an expression of you that tells your story. People will find your work and link to you and say--"Here is someone just like me, I'm not alone." Everyone's voice matters. Personal relationships can be very complex and because of it people will be more or less responsive to your message. Yet others are willing to listen. Take your voice to them and in your own words, by your own way, and let them know you matter, your words matter and you are very real in what you feel and that you don't need anyone's validation on what you do towards healing. You are proceeding at a pace that is set forth by your doctors and they will change it when they feel you are ready but not before that point. 

 

 

Thanks, @WinterSown

I have thought about blogging or starting a YouTube channel.  I just don't know if I can deal with all the trolls.

Recently I have been watching one of my favorite YouTubers get torn down in the comments sections of her videos...over makeup.  And she's such a sweet person.  Trolls go after her because they know she is sensitive and they can get to her.  I don't want to make myself vulnerable and get torn down like she does.   I just don't think I can handle it right now. 

 

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On 21-3-2018 at 4:17 PM, Mistri_The_Squirrel said:

Thanks, @WinterSown

I have thought about blogging or starting a YouTube channel.  I just don't know if I can deal with all the trolls.

Recently I have been watching one of my favorite YouTubers get torn down in the comments sections of her videos...over makeup.  And she's such a sweet person.  Trolls go after her because they know she is sensitive and they can get to her.  I don't want to make myself vulnerable and get torn down like she does.   I just don't think I can handle it right now. 

 

That is a fast and super easy fix!  Turn commenting off. You don't have to have people make comments, you control that aspect. You can project yourself to the public and not be afflicted by other people's call for attention. Trolls are never about you--they are ALWAYS about themselves--so without the capacity for them to ire you they go get their jollies stomping around on some other person's page. Turn off comments in the settings and don't give them a venue to misbehave on your pages. Remember the old saying 'Don't let the ********* get you down?' Well, it's the internet age. Don't let the trolls stop you from singing your song as loudly and proudly as you want. Give 'em ****.

 

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1 hour ago, WinterSown said:

That is a fast and super easy fix!  Turn commenting off. You don't have to have people make comments, you control that aspect. You can project yourself to the public and not be afflicted by other people's call for attention. Trolls are never about you--they are ALWAYS about themselves--so without the capacity for them to ire you they go get their jollies stomping around on some other person's page. Turn off comments in the settings and don't give them a venue to misbehave on your pages. Remember the old saying 'Don't let the ******** get you down?' Well, it's the internet age. Don't let the trolls stop you from singing your song as loudly and proudly as you want. Give 'em ****.

 

I don't know that I would feel heard if there was no interaction with others.  I think I would still feel like I'm talking to the wind. 

If I can get on a working antidepressant, I will be able to deal with trolls.  I just can't do it when I'm feeling fragile.

I felt like I could take on the world when I was on 50 mg of Pristiq.  Unfortunately, I had to go down to 25 mg because Pristiq aggravates my heart rate and BP problems.   I need to get on something else, but that's another problem for another thread.  

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I'm sorry . I entered a reply in the wrong area and my name is appearing on this post  above by mistake instead of the person that posted it. . I'm hoping that the person who posted it .com add their name bac.

Edited by Pearlie
Entered in wrong area? New to site.

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On 3/16/2018 at 6:37 PM, Mistri_The_Squirrel said:

I have a longstanding history of depression and anxiety.  It was hard to get doctors to take me seriously when I was looking for my POTS diagnosis, but I kept pushing.  Most seemed eager to write my symptoms off as anxiety.   But I have over 30 years of experience with anxiety; I knew it wasn't anxiety.  I wound up keeping the weirder symptoms to myself and telling them only about the things I thought they could measure or see, because I knew they wouldn't believe me if I told them everything. 

Even my POTS specialist doesn't believe that I had a weird reaction to mestinon (feeling drugged), and her staff members have treated me like I am a head case when I have called with questions.  (I guess I could understand that more if I called there crying or hysterical, but I haven't.)  Apparently I'm supposed to know everything about POTS already, even though I was just diagnosed in December.  But I can't exactly change providers, because there is no one else around here who knows as much about POTS.

It would be easier to deal with the POTS if I didn't have depression and anxiety, but you can't choose your illnesses.  I'm sick and tired of doctors and family members not listening or not believing me.  Many family members have horrible advice to give out as well: "go for walks," "if your energy is low, drink coffee or take caffeine pills,"  or--my perennial favorite--"just try," or "try harder."   OMG, you're so right!!  Why didn't I think of that?  :rolleyes:   :angry:

I've been told that I'm very good at writing and communicating verbally, but so often I feel like I'm shouting at deaf people.  I can tell people how I feel, but no matter how articulate I am, I can't make them feel it. 

I can't even get them to listen

I have experienced this my whole entire life. Still experiencing it now. 

My mom has just recently become more concerned with the physical health portion of it because I have steadily declined in the last year, especially so the last six months. We have no answers. I have had a full cardio work up numerous times over the years with no real diagnosis. My symptoms have changed over time but the tachycardia, dizziness, fainting, exhaustion, shortness of breath (which I always just thought I was extremely out of shape lol) has remained. My cardiologist is wonderful but because of my history of anxiety, depression, and anorexia (I’ve been in recovery for seven years with a few slip ups but no relapses) she feels most of my symptoms are because of the depression and anxiety. However, my psychiatrist and therapist do not believe these are psychological symptoms (but I don’t know if they aren’t just saying this to appease me or if they really believe something is going on.) But I have been trained since I was a teenager that all of my problems are in my head and have a difficult time believing even myself. I also minimize everything. 

I feel you & I’m listening. 

 

Shannon 

Edited by Shannoncr
Wanted to clarify I am no longer actively anorexic

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Great letter Pistol! 

WinterSown - Our old beloved family doctor always used to say, "someone had to graduate at the bottom of the class!"  We have dumped those!

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On 5/2/2018 at 8:56 AM, Shannoncr said:

I have experienced this my whole entire life. Still experiencing it now. 

My mom has just recently become more concerned with the physical health portion of it because I have steadily declined in the last year, especially so the last six months. We have no answers. I have had a full cardio work up numerous times over the years with no real diagnosis. My symptoms have changed over time but the tachycardia, dizziness, fainting, exhaustion, shortness of breath (which I always just thought I was extremely out of shape lol) has remained. My cardiologist is wonderful but because of my history of anxiety, depression, and anorexia (I’ve been in recovery for seven years with a few slip ups but no relapses) she feels most of my symptoms are because of the depression and anxiety. However, my psychiatrist and therapist do not believe these are psychological symptoms (but I don’t know if they aren’t just saying this to appease me or if they really believe something is going on.) But I have been trained since I was a teenager that all of my problems are in my head and have a difficult time believing even myself. I also minimize everything. 

I feel you & I’m listening. 

 

Shannon 

Thank you, @Shannoncr.   ❤️  I hope you are able to find some relief.

It is hard enough having to deal with this.  It's even harder when you are dealing with mental health problems.  

It's as if the doctors believe we have some sort of immunity to physical illness.  I guess that's easier to swallow than the possibility that they don't know everything.

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