Newly Diagnosed Member

[DatDudue55]

Hello everyone, 

I'm glad to have found this community. This is just a general post to see if anyone can relate to my situation. 

I was undiagnosed for nearly 3 years with strange symptoms. I started to get this very sick feeling roughy 3 years ago, where I felt feverish, stomach problems, fatigue and migraines. I would just lay in bed and would feel awful. This was going on for nearly a year and a half.

However, as it developed, I changed my diet (nearly paleo) and I started to exercise regularly (started off doing about 30 min 3x/ week) and now I am up to at least 6x/ week doing 1 hour workouts. I currently experience facial tingling/flushing feeling, especially after standing or talking for a while, I will feel feverish but my temp is always nearly 97.8 (F), general malaise, fatigue and nasal congestion on one side of my nose. The facial tingling and the headaches seem to be management by exercise.

Despite finally getting an answer, I sill let my mind wonder and I convince myself that I have something else. My biggest worry is that I have CFS. Despite exercise helping me and my ability to work full time and go to school full time and workout is a true blessing after not being able to for so long. I am young (22) and I guess I just do not want to do anything that will make me worse in the long-run and I also think I psych myself out sometimes as well.

My Dr. told me that generally with Dysautonomia, the patient will either get worse and it becomes chronic OR it will eventually get better. Will pushing myself make myself worse long-term? Or is it all up to fate?

Sorry for all the ranting/newbie questions.

Looking for someone to ease my mind and help me figure this out as a person with a fresh diagnosis.

Thank you in advance,

-DatDude55

[Guest KiminOrlando]

The exercise will help long term regardless of which version of dysautonomia you end up with. Your doctor is right. It will either run its course and you will get better or it will be chronic. Nothing you can do will control that. Do what you can for as long as you can, but not to the point that you are miserable. Don't stop living your life.

[MomtoGiuliana]

And I would add that perhaps a third option is that severe symptoms will come and go throughout your life--not sure if that is the same thing as "chronic" exactly.  I have had two severe episodes in my life, which caused me to be disabled.  Both times, I improved within months to being functional and eventually exercising again.  My symptoms are mostly mild, most of the time otherwise.

[DatDudue55]

2 hours ago, KiminOrlando said:

The exercise will help long term regardless of which version of dysautonomia you end up with. Your doctor is right. It will either run its course and you will get better or it will be chronic. Nothing you can do will control that. Do what you can for as long as you can, but not to the point that you are miserable. Don't stop living your life.

Thank you so much for your response. I am still young (22) so I am trying to live my life to the fullest while I can. I really do appreciate the advice. I'm still trying to figure this all out. I like learning new things, so I'm trying to absorb any advice and info I can get.

Thank you again

[DatDudue55]

2 hours ago, MomtoGiuliana said:

And I would add that perhaps a third option is that severe symptoms will come and go throughout your life--not sure if that is the same thing as "chronic" exactly.  I have had two severe episodes in my life, which caused me to be disabled.  Both times, I improved within months to being functional and eventually exercising again.  My symptoms are mostly mild, most of the time otherwise.

Thank you for your input! For me, i seem to have good and bad weeks. Depending on diet, stress, sleep patterns etc. When I first started, I felt awful, then I changed my lifestyle and I had nearly no symptoms for about a month or so. They did come back, but they are manageable now. Thank you for your input. I really do appreciate it.

 

[WinterSown]

I think exercise is as good or better than drugs for helping you with your symptoms. I do walk and exercise daily and do PT twice a week. I am working on improving overall strength, core, and balance. It's super helpful--I feel better afterwards because it is good for circulation. Good luck to you.

 

[DatDudue55]

38 minutes ago, WinterSown said:

I think exercise is as good or better than drugs for helping you with your symptoms. I do walk and exercise daily and do PT twice a week. I am working on improving overall strength, core, and balance. It's super helpful--I feel better afterwards because it is good for circulation. Good luck to you.

 

Thank you for your response! I am glad to hear that your program is helping you with symptoms. I am trying to focus more on the core and balance training for sure as I know that's an important aspect of the wellness of the body. Thank you so much for your response

 

[bombsh3ll]

20 hours ago, DatDudue55 said:

(started off doing about 30 min 3x/ week) and now I am up to at least 6x/ week doing 1 hour workouts.

I think the fact that your symptoms & functional capacity have improved over time, plus your young age are very encouraging in terms of prognosis. For those of us who are severe & chronic, the course is usually static or progressively worsens without remission (unless we find a new medication that helps for a time). 

I would definitely say keep exercising as much as you are able! I was very active prior to POTS & even since then have exercised nearly every day on a recumbent bike. Even if it doesn't make you better, it is good for your heart, lungs, circulation, muscle mass, sleep & mood & can help prevent complications like blood clots. 

B xxx

[JimL]

i think they need to figure out why you're having these symptoms. calling dysautomia is fine, but there are a lot of underlying causes that may be treated to make it better, some can't and what worries me is that being a male that got this older, I have to wonder if it's something more serious. Most people that get dysautonomia are women in their 30's or so it seems. I wonder what the numbers are in terms of sex versus underlying causes. I think guys are more likely to get it from PNS/carcinoid types of problems. That said, you've had this for 3 years. My only advice is have the doctors drill down on the cause and remain as active as you can without overdoing it. 

[Guest KiminOrlando]

@JimL I agree with you about men. TTR Amyloidosis is also a concern. When men get this, it goes against consensus. Not saying it couldn't be the regular kind, but it seems more dangerous to me. 

[JimL]

27 minutes ago, KiminOrlando said:

@JimL I agree with you about men. TTR Amyloidosis is also a concern. When men get this, it goes against consensus. Not saying it couldn't be the regular kind, but it seems more dangerous to me. 

my mother had amyloidosis. She came down with it at 70 and she died 2.5 years later. I think it was light chain. It attacked her kidneys first. She also had multiple myeloma secondarily. it's been 24 years and the treatments haven't improved much. 

[DatDudue55]

On 4/24/2019 at 8:45 AM, bombsh3ll said:

I think the fact that your symptoms & functional capacity have improved over time, plus your young age are very encouraging in terms of prognosis. For those of us who are severe & chronic, the course is usually static or progressively worsens without remission (unless we find a new medication that helps for a time). 

I would definitely say keep exercising as much as you are able! I was very active prior to POTS & even since then have exercised nearly every day on a recumbent bike. Even if it doesn't make you better, it is good for your heart, lungs, circulation, muscle mass, sleep & mood & can help prevent complications like blood clots. 

B xxx

Thank you for your response! I am very lucky to be able to workout and stay active. Im trying to do everything I can without pushing myself too far. Ive been hearing that exercise is the best medicine. It's inspiring to hear people like you that still make exercise a priority, no matter what it is. Thank you for your input and for sharing. Best of luck to you

[DatDudue55]

23 hours ago, JimL said:

i think they need to figure out why you're having these symptoms. calling dysautomia is fine, but there are a lot of underlying causes that may be treated to make it better, some can't and what worries me is that being a male that got this older, I have to wonder if it's something more serious. Most people that get dysautonomia are women in their 30's or so it seems. I wonder what the numbers are in terms of sex versus underlying causes. I think guys are more likely to get it from PNS/carcinoid types of problems. That said, you've had this for 3 years. My only advice is have the doctors drill down on the cause and remain as active as you can without overdoing it. 

Yeah absolutely. That is my main concern as well moving forward: trying to find the underlying cause. I was actually just tested for carcinoid tumors and that test came back negative. 

So you're essentially saying that because I'm a male and I'm younger, that you feel that the underlying cause may be more serious? I was told by my Dr that IBS can be an underlying cause. I've had a lot of stomach problems and was tested for Celiacs and they did an endoscopy and colonoscopy of my stomach only to find mild acid reflux. I also believe I am gluten intolerant. Let me know what you think of all of this. Thank you for your input!

[JimL]

5 minutes ago, DatDudue55 said:

Yeah absolutely. That is my main concern as well moving forward: trying to find the underlying cause. I was actually just tested for carcinoid tumors and that test came back negative. 

So you're essentially saying that because I'm a male and I'm younger, that you feel that the underlying cause may be more serious? I was told by my Dr that IBS can be an underlying cause. I've had a lot of stomach problems and was tested for Celiacs and they did an endoscopy and colonoscopy of my stomach only to find mild acid reflux. I also believe I am gluten intolerant. Let me know what you think of all of this. Thank you for your input!

Not the younger part. If you were older, yes. Young people seem to get POTS more often. I think it's more unusual with men over 40. I have a colonoscopy and EGD a week from tomorrow. 

[DatDudue55]

Ohh my apologies. I misunderstood. But please keep me updated! I wish the best of luck to you and I hope to head an update from you.

[bombsh3ll]

I think continuing to seek an underlying cause is important for everyone, regardless of your demographic. I will never give up looking. Although the UK is pretty backward in terms of dysautonomia research, exciting studies are going on around the world looking at autoimmunity etc. I expect there will be new advances in years to come. 

I am currently being investigated for a CSF leak and craniocervical instability, both of which can cause POTS and are potentially treatable. 

Unfortunately as with most illnesses, from what I know, women tend to be investigated less & diagnosed later than men due to subconscious gender bias & incorrect attribution of physical symptoms to anxiety/depression. A previously healthy woman suddenly becoming unable to live a normal life, work etc can all too often be regarded as being less important than a male the same age suddenly becoming incapacitated. I am aware of this from my previous medical career, and have also now lived it as a patient. 

This may in part contribute to the higher rates of underlying diagnoses identified in males - simply because they are looked for. 

B xxx

[DatDudue55]

On 4/25/2019 at 12:54 PM, bombsh3ll said:

I think continuing to seek an underlying cause is important for everyone, regardless of your demographic. I will never give up looking. Although the UK is pretty backward in terms of dysautonomia research, exciting studies are going on around the world looking at autoimmunity etc. I expect there will be new advances in years to come. 

I am currently being investigated for a CSF leak and craniocervical instability, both of which can cause POTS and are potentially treatable. 

Unfortunately as with most illnesses, from what I know, women tend to be investigated less & diagnosed later than men due to subconscious gender bias & incorrect attribution of physical symptoms to anxiety/depression. A previously healthy woman suddenly becoming unable to live a normal life, work etc can all too often be regarded as being less important than a male the same age suddenly becoming incapacitated. I am aware of this from my previous medical career, and have also now lived it as a patient. 

This may in part contribute to the higher rates of underlying diagnoses identified in males - simply because they are looked for. 

B xxx

Yeah I agree. It feels good to be able to finally get some sort of a diagnosis, but I do want to know what exactly is causing my symptoms (the underlying). 

I am a young male and I do not have much knowledge on the subject matter. However, I  do hope that you can figure out a cause to your  symptoms as everyone deserves to know what their body is telling them! Thank you for your response and encouragement. It is much appreciated ! Good luck to you on your journey

[JimL]

On 4/25/2019 at 10:54 AM, bombsh3ll said:

I think continuing to seek an underlying cause is important for everyone, regardless of your demographic. I will never give up looking. Although the UK is pretty backward in terms of dysautonomia research, exciting studies are going on around the world looking at autoimmunity etc. I expect there will be new advances in years to come. 

I am currently being investigated for a CSF leak and craniocervical instability, both of which can cause POTS and are potentially treatable. 

Unfortunately as with most illnesses, from what I know, women tend to be investigated less & diagnosed later than men due to subconscious gender bias & incorrect attribution of physical symptoms to anxiety/depression. A previously healthy woman suddenly becoming unable to live a normal life, work etc can all too often be regarded as being less important than a male the same age suddenly becoming incapacitated. I am aware of this from my previous medical career, and have also now lived it as a patient. 

This may in part contribute to the higher rates of underlying diagnoses identified in males - simply because they are looked for. 

B xxx

I just find that if they can't figure it out quickly, they default to it's in your head. There seems to be a resistance to admitting they don't know.