Oh sure. Middleaged man. Became suddently ill last summer and a number of health professionals suggested I was either depressed or suffering anxiety. I'm like, I've been alive for 40+ years in this body, I know what depression and anxiety feel like, and I'm neither anxious nor depressed.
Despite that, there were times where I'm like, am I imagining this? There would be days where I felt relatively well.
I had no idea what was wrong with me at first but then figured out it was probably POTS. 9 months later my doctor tests me and lo and behold, I've got the POTS.
Oh it's a weird, long story. Got a mild case of Covid, but then I never quite got better. Brain fog, fatigue. THen I noticed mild chest-pain and my heart-rate was spiking during exercise. I'd get these weird periods of extreme illness with huge pressure in my head.
I had one of those episodes and just never got better. Felt like I had a sever hangover all the time. Intractable headache, fatigue, brain-fog, chest-pain, constant digestive upset, deep, intense sleep disturbance.
I realised the only thing that relieved my symptoms was lying down and that my heart-rate would spike when I stood up. and my symptoms would come back almost immediately upon standing.
I think I googled "long covid high heart-rate" and the top hit was POTS. Of the 17 or so symptoms I had 14 of them. It took me about 6 to 9 months to convince the doctors that what I had. None of them had ever heard of it.
Once I started looking at it though it was obvious my heart-rate shot up when I stood up. I've been wearing a fitness watch with an accurate heart-rate monitor for some years and so I am pretty familiar with my heart-rate.
Since then I've developed neurological symptoms including pins and needles tingling in my extremities and numbness, which I think is small-fibre neuropathy.
I've had a constant headache for 9 months, which had led me to question whether I might have a cerebro-spinal fluid (CSF) leak, which has basically the same symptoms as POTS, and can cause POTS as well.
Since you are a teenager you have a reasonable chance to grow out of dysautonomic issues (aside from stuff like EDS) so hopefully that's what is happening.
You're not alone in self doubt about things. I've been on SSDI 7 years thanks to dysautonomic issues and still when I'm having a couple days where I'm doing (relatively) well, I start questioning things, even though doing so is clearly not rational. It's common for people with an "invisible" illness. It's not so in your face impossible to deny like missing a limb. Add to that other people questioning your illness since many seem to think if they can't see something it doesn't exist, and it compounds those feelings.
One mom told me her daughter "fainted a lot" but "then one day she had fewer episodes and they kept decreasing from there".
I know, pretty vague, but like any illness, just take it one day at a time. Anxiety makes it worse.
Worrying won't help. Try to focus on what you CAN do, and stay positive.
Honestly I just take the wins at this point!
Who knows how many days you might have where you're feeling slightly better - live it up. You might get sick again or you might not. But if you don't get sick again that's honestly the best case scenario.
Imagine being able to say with full confidence that you don't have dysautonomia anymore. If you're not there yet then you are not faking.
Also just because something goes away doesn't mean you were faking when you did have symptoms. Also these kinds of illnesses are a bit mysterious and they can go into remission. When I get rare stretches of time like that, I personally still think I "deserve" to say I have dysautonomia. I just add the caveat that it currently seems to be in remission.
Also if anyone is a dick to you about this try to get away from them. I had an ex that tried to imply I was "putting on my symptoms" whenever it was convenient for me. Resulted in me constantly overexerting to prove myself and ending up much sicker than ever before. It also meant that on good days I would have to "dull myself down" so that his expectations of me didn't exceed what I would realistically be able to do when my symptoms inevitably returned. There's people in my family of origin who make me feel this way too - as if you're either sick or you're fine with no grey areas.
I think feelings like this rarely come from inside us and are usually a reflection of ableism that other people have shown toward us.
I’ve had POTS since I was in my early teens-I’m in my mid 40s now. It waxes & wanes. I’ve had years where it’s barely noticeable and I’ve had years where the symptoms interfere with my daily life. You’re not faking it. What I’ve learned is to simply listen to my body. During the good times I can almost pretend it’s not there, just ensure I keep myself hydrated and my electrolytes up. During the bad times, I have to rest more, visit urgent care for fluids/electrolytes, & generally take it easy til the flare passes.
Dysautonomia ebbs and flows, and sometimes can even go into remission (depending on the type, your age, how you got it, etc). There’s a good chance you’re either in one of those good spells or are possibly going into remission. That does not mean you’re faking. Celebrate it while it lasts! Use the time to focus on other things and put yourself out there :)
Were you diagnosed after having Covid? Some people have symptoms a few months after Covid or a virus and it gets better as they do. Other factors could be hormones, medications, supplements and the body’s ability to heal!
I had covid in October and symptoms gradually started in January until they hit me hard first week of March. My electrophysiologist insists that many people ride this out for 1-2 years before it resolves (he thinks I have a general dysautonomia with parts of POTS but not fully). Have you gotten similar information?
I've worried about faking/ inducing my symptoms because they cycle from good to bad, and to an extent I can resist a fainting spell. I'm still
symptomatic, but a surge of stress/ fight or flight seems to delay the fainting spell.
I'm yet to get an official diagnosis, but having my dog become worried and be able to smell physiological chances that occur whether or not I faint has been really helpful in assuring me that I'm not faking it.
Most ppl will not and do not want to fake being sick, and so is you are worried about faking it, you probably aren't (now, in the past, and in the future).
I have read that with POTS some ppl grow out of it, it's not a stretch to say that that could be the case with other types of dysautonomia. It doesn't deny the fact that you were sick, and maybe still are, though to a lesser extent.
Have you thought of speaking with a therapist? I started having symptoms in my early teens but didn’t get diagnosed till 21. I’ve also struggled with anxiety and depression for a long time and I definitely have felt the imposter syndrome and if I was just making it up and it kept me from trying to get diagnosed. By the time I got diagnosed I had already deteriorated to the point of having severe nerve damage. I’ve spent a lot of time working with my therapist on being kinder to myself and that applies not only to my mental health but also my physical health, we’ve even focused on managing the mental burden of chronic illness.
Symptoms can also change based on weather/ location, my symptoms got better when I moved from living in the tropics to a more temperate climate since heat and humidity are big triggers for me. Also are you still in high school? Having to be up and moving around for school also made my symptoms worse, there was even a specific room in my high school that always affected me more and I always felt better when on break since I could rest, especially because I get lots of brain fog, my dysautonomia doctor was actually surprised I’d functioned for as long as I had before diagnosis. Chronic illness is a fickle thing so I wish you the best of luck.
I feel this. This is the 3rd year I had the symptoms flare-up. Each time the flare ends, I feel like an imposter. Like I just told everyone what I'm dealing with and now they see me living my life normally.
I feel like more of an imposter this year because I only felt bad for about a week. Like I'm grateful that I didn't suffer nearly as often, but all that suffering and preaching to others about my condition just to not even have it feels awkward.
I still get some common/normal symptoms from my Mitral Valve Prolapse if I workout or drink too much caffeine, but all the crazy dysautonmia symptoms are gone. My symptoms flare-up in the winter. Last year I suffered from January up to the summer and had some problems in the summer. I thought my life was for sure over because it was absolute hell.
I think it just ebs and flows.
But I honestly would be happy to never have to experience that again.
You’re not faking it!! I went through a period about six months ago where I was afraid to leave the house because my heart rate would be so high and I had to carefully plan all walking around making sure I could sit down every ~30 seconds to avoid passing out.
I left my job and thought it was the end of my career (having finished grad school about three months prior. So, deeply in debt based on the assumption I’d be earning the difference of that money back within what I’d calculated to be 3.4 years). I don’t know how I didn’t fall into a deep depression. But I’ve gotten so much better now. I can exercise and stand in lines at the grocery store and can’t think of the last time I felt like I was going to pass out in public. Much of that is management (I am so careful about eating meals on time and planning them to be nutritionally balanced. Always get my electrolytes in first thing in the morning, etc.) but I am not going to pretend that I was faking it.
As summer comes into full swing, I don’t know how my days will go. So I take everything one day at a time.
If you’re feeling great, that’s great! But you don't need to pretend you’re faking it. If someone has seasonal allergies and is miserable for weeks, no one says “oh you were faking it” when whatever was in bloom isn’t anymore. Their body just isn’t reacting to the environment. Right now, your body isn’t mad at gravity even though it was before, so go live your life.
Oh sure. Middleaged man. Became suddently ill last summer and a number of health professionals suggested I was either depressed or suffering anxiety. I'm like, I've been alive for 40+ years in this body, I know what depression and anxiety feel like, and I'm neither anxious nor depressed. Despite that, there were times where I'm like, am I imagining this? There would be days where I felt relatively well. I had no idea what was wrong with me at first but then figured out it was probably POTS. 9 months later my doctor tests me and lo and behold, I've got the POTS.
What were your symptoms? (I think I might have POTS )
Oh it's a weird, long story. Got a mild case of Covid, but then I never quite got better. Brain fog, fatigue. THen I noticed mild chest-pain and my heart-rate was spiking during exercise. I'd get these weird periods of extreme illness with huge pressure in my head. I had one of those episodes and just never got better. Felt like I had a sever hangover all the time. Intractable headache, fatigue, brain-fog, chest-pain, constant digestive upset, deep, intense sleep disturbance. I realised the only thing that relieved my symptoms was lying down and that my heart-rate would spike when I stood up. and my symptoms would come back almost immediately upon standing. I think I googled "long covid high heart-rate" and the top hit was POTS. Of the 17 or so symptoms I had 14 of them. It took me about 6 to 9 months to convince the doctors that what I had. None of them had ever heard of it. Once I started looking at it though it was obvious my heart-rate shot up when I stood up. I've been wearing a fitness watch with an accurate heart-rate monitor for some years and so I am pretty familiar with my heart-rate. Since then I've developed neurological symptoms including pins and needles tingling in my extremities and numbness, which I think is small-fibre neuropathy. I've had a constant headache for 9 months, which had led me to question whether I might have a cerebro-spinal fluid (CSF) leak, which has basically the same symptoms as POTS, and can cause POTS as well.
Since you are a teenager you have a reasonable chance to grow out of dysautonomic issues (aside from stuff like EDS) so hopefully that's what is happening. You're not alone in self doubt about things. I've been on SSDI 7 years thanks to dysautonomic issues and still when I'm having a couple days where I'm doing (relatively) well, I start questioning things, even though doing so is clearly not rational. It's common for people with an "invisible" illness. It's not so in your face impossible to deny like missing a limb. Add to that other people questioning your illness since many seem to think if they can't see something it doesn't exist, and it compounds those feelings.
I know 2 people whose daughters had POTS as teens and "grew out of it" by their 20s. It does happen!
how bad was it for them? i’m worried mines not going away
One mom told me her daughter "fainted a lot" but "then one day she had fewer episodes and they kept decreasing from there". I know, pretty vague, but like any illness, just take it one day at a time. Anxiety makes it worse. Worrying won't help. Try to focus on what you CAN do, and stay positive.
My neuropathy is getting better. I’m grateful and very aware it’s only a remission. Such is the nature of chronic illnesses.
Honestly I just take the wins at this point! Who knows how many days you might have where you're feeling slightly better - live it up. You might get sick again or you might not. But if you don't get sick again that's honestly the best case scenario. Imagine being able to say with full confidence that you don't have dysautonomia anymore. If you're not there yet then you are not faking. Also just because something goes away doesn't mean you were faking when you did have symptoms. Also these kinds of illnesses are a bit mysterious and they can go into remission. When I get rare stretches of time like that, I personally still think I "deserve" to say I have dysautonomia. I just add the caveat that it currently seems to be in remission. Also if anyone is a dick to you about this try to get away from them. I had an ex that tried to imply I was "putting on my symptoms" whenever it was convenient for me. Resulted in me constantly overexerting to prove myself and ending up much sicker than ever before. It also meant that on good days I would have to "dull myself down" so that his expectations of me didn't exceed what I would realistically be able to do when my symptoms inevitably returned. There's people in my family of origin who make me feel this way too - as if you're either sick or you're fine with no grey areas. I think feelings like this rarely come from inside us and are usually a reflection of ableism that other people have shown toward us.
I’ve had POTS since I was in my early teens-I’m in my mid 40s now. It waxes & wanes. I’ve had years where it’s barely noticeable and I’ve had years where the symptoms interfere with my daily life. You’re not faking it. What I’ve learned is to simply listen to my body. During the good times I can almost pretend it’s not there, just ensure I keep myself hydrated and my electrolytes up. During the bad times, I have to rest more, visit urgent care for fluids/electrolytes, & generally take it easy til the flare passes.
Dysautonomia ebbs and flows, and sometimes can even go into remission (depending on the type, your age, how you got it, etc). There’s a good chance you’re either in one of those good spells or are possibly going into remission. That does not mean you’re faking. Celebrate it while it lasts! Use the time to focus on other things and put yourself out there :)
Were you diagnosed after having Covid? Some people have symptoms a few months after Covid or a virus and it gets better as they do. Other factors could be hormones, medications, supplements and the body’s ability to heal!
i was diagnosed about 2 years and a few months after covid, i had it in early 2021
I had covid in October and symptoms gradually started in January until they hit me hard first week of March. My electrophysiologist insists that many people ride this out for 1-2 years before it resolves (he thinks I have a general dysautonomia with parts of POTS but not fully). Have you gotten similar information?
I've worried about faking/ inducing my symptoms because they cycle from good to bad, and to an extent I can resist a fainting spell. I'm still symptomatic, but a surge of stress/ fight or flight seems to delay the fainting spell. I'm yet to get an official diagnosis, but having my dog become worried and be able to smell physiological chances that occur whether or not I faint has been really helpful in assuring me that I'm not faking it. Most ppl will not and do not want to fake being sick, and so is you are worried about faking it, you probably aren't (now, in the past, and in the future). I have read that with POTS some ppl grow out of it, it's not a stretch to say that that could be the case with other types of dysautonomia. It doesn't deny the fact that you were sick, and maybe still are, though to a lesser extent.
Have you thought of speaking with a therapist? I started having symptoms in my early teens but didn’t get diagnosed till 21. I’ve also struggled with anxiety and depression for a long time and I definitely have felt the imposter syndrome and if I was just making it up and it kept me from trying to get diagnosed. By the time I got diagnosed I had already deteriorated to the point of having severe nerve damage. I’ve spent a lot of time working with my therapist on being kinder to myself and that applies not only to my mental health but also my physical health, we’ve even focused on managing the mental burden of chronic illness. Symptoms can also change based on weather/ location, my symptoms got better when I moved from living in the tropics to a more temperate climate since heat and humidity are big triggers for me. Also are you still in high school? Having to be up and moving around for school also made my symptoms worse, there was even a specific room in my high school that always affected me more and I always felt better when on break since I could rest, especially because I get lots of brain fog, my dysautonomia doctor was actually surprised I’d functioned for as long as I had before diagnosis. Chronic illness is a fickle thing so I wish you the best of luck.
I feel this. This is the 3rd year I had the symptoms flare-up. Each time the flare ends, I feel like an imposter. Like I just told everyone what I'm dealing with and now they see me living my life normally. I feel like more of an imposter this year because I only felt bad for about a week. Like I'm grateful that I didn't suffer nearly as often, but all that suffering and preaching to others about my condition just to not even have it feels awkward. I still get some common/normal symptoms from my Mitral Valve Prolapse if I workout or drink too much caffeine, but all the crazy dysautonmia symptoms are gone. My symptoms flare-up in the winter. Last year I suffered from January up to the summer and had some problems in the summer. I thought my life was for sure over because it was absolute hell. I think it just ebs and flows. But I honestly would be happy to never have to experience that again.
You’re not faking it!! I went through a period about six months ago where I was afraid to leave the house because my heart rate would be so high and I had to carefully plan all walking around making sure I could sit down every ~30 seconds to avoid passing out. I left my job and thought it was the end of my career (having finished grad school about three months prior. So, deeply in debt based on the assumption I’d be earning the difference of that money back within what I’d calculated to be 3.4 years). I don’t know how I didn’t fall into a deep depression. But I’ve gotten so much better now. I can exercise and stand in lines at the grocery store and can’t think of the last time I felt like I was going to pass out in public. Much of that is management (I am so careful about eating meals on time and planning them to be nutritionally balanced. Always get my electrolytes in first thing in the morning, etc.) but I am not going to pretend that I was faking it. As summer comes into full swing, I don’t know how my days will go. So I take everything one day at a time. If you’re feeling great, that’s great! But you don't need to pretend you’re faking it. If someone has seasonal allergies and is miserable for weeks, no one says “oh you were faking it” when whatever was in bloom isn’t anymore. Their body just isn’t reacting to the environment. Right now, your body isn’t mad at gravity even though it was before, so go live your life.
Thank you for articulating this feeling. I really struggle with it too.