I wrote a while back about my diagnosis with POTS/EDS . I wanted to give an update because I haven’t mentioned it a whole lot or what it is like to live with POTS or EDS. For those who aren’t familiar with them. POTS or Postural Orthostatic Tachycardia Syndrome is a form of Dysautonomia. The long and short of it is that I have VERY low blood pressure, a VERY high heart rate, I do not have the ability to control my temperature, heart rate, blood pressure or anything that is AUTOMATIC in my body. My blood flow is one of those things as well which is why I look so pale all the time. Nope it’s not a lack of sun exposure. It’s just something I have that I can’t change. I also bruise extremely easily. If I slightly hit my arm on a door I will have a giant black and blue bruise the next day.
EDS or Ehlers Danlos Syndrome is “is an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen.” I am super flexible and I shouldn’t be. I have several place where I am double jointed or can make myself double jointed.
Most people with POTS also have EDS. However it is not the other way around.
I spent my entire life up until last summer not knowing what was wrong with me. I was misdiagnosed with Anemia in high school and couldn’t figure out why I was so exhausted all the time. I was put on medication last summer and for the most part I have been a lot better. The medication, certain exercises and an increased sodium diet are for sure things that helped me. However for reasons I do not want to go into I recently had to wean off the medication. This has been EXTREMELY difficult on my body.
All of the sudden I was exhausted at 1PM daily. I had a hard time staying away. I was feeling overly nauseous and like I had vertigo. I was hot, then cold, and so on and so forth. My doctor had me start taking salt pills or supplements rather. Yes it helps but even on days where I take a ton of salt supplements and eat salty foods and do my exercises that help the circulation in my legs I still can feel really crappy. It’s unfortunate but I know so many people have it so much worse off.
The biggest thing being diagnosed with EDS/POTS has taught me is that you should always listen to your body. If you know something is wrong and doctors are telling you, you are fine. You need to find the right doctors. If you have a diagnosis and you know you are exhausted and aren’t feeling well. You need to listen to your body and rest.
There are a ton more daily things I deal with like: blurred vision, migraines, chills, loss of appetite, issues sleeping etc.
Last time I talked about this I had several people email me telling me they had similar issues and after my post they went to a doctor and were diagnosed. There are less than one million diagnosed cases of POTS in the United States but studies have shown it should be 3-4 times that many. If you have these symptoms even a few of them please see a doctor!
Do you know anyone with POTS?
I had never heard of POTS or EDS before. So interesting to learn more about them. You are a strong woman!
I knew a girl with EDS once, but had never heard of POTS until I read this. Bless you for opening up about it here. Listening to your doctor(s) AND your body is huge in so many ways. Thank you for sharing this today. You’re in my thoughts and prayers!
WOW I had no idea! I missed that original post. I don’t want to seem like I’m blowing smoke, but having interacted with you for half a Saturday, I would have never known. You are absolutely rocking to me. I really cannot agree more with you on listening to your body. I truly hope that in your journey you find some respite and that you’ll share more with us. Education is so important and look at you – already changing lives.
I have a friend with POTS. I have Fibromyalgia and through some groups for that I have known some people with EDS.
While I don’t seem to have POTS, I do have hypotension and sinus tachycardia, so I experience some similar symptoms to POTS. It’s not fun at all! And it seems like anything that will help one thing will hurt the other which is frustrating. My cardiologist believes the hypotension is either from me not absorbing salt properly, a reaction to my tachycardia, or a reaction to my pain, while most people have high bp from pain he said some can have low. And no one can figure out the tachycardia but it seems to run in my family.
Thank you for sharing this information! I hope you are able to control your symptoms, chronic illnesses suck.
Wow you just explained 98% of my symptoms. My doctors have told me it is because I don’t exercise, over weight and menopausal. I have an appointment on the 1st to follow up with possible pneumonia and I will certainly talk to him about it then.
Thank you so much for sharing.
You are the first but as a person with illness of my own that are chronic I admire how brave you are. It takes forever in today’s medical society to get correctly diagnosed and its a hard road to follow to diagnosis and treatment that works for you. It takes a very strong person to deal with your illness every day. I think your doing very well and thank you for the information. Good to be knowledgeable as our doctors certainly are not.
I have so good friends who have POTS/EDS/Dysautonomia so it’s great to see it being written about on a mainstream-focused blog!
Hi, Neely, I don’t know anyone with that particular disorder. But I agree that you shouldn’t stop with just one doctor telling you you are fine. Ugh! Very frustrating. I am fortunate to have a daughter who is a nurse practitioner, so she loads me up with questions and then challenges the words of the doctors to help me get to the right answers. Want to borrow her sometime??? God bless, and hope you continue to feel better, despite the current setback.
This is so fascinating to me. I have Raynaud’s – another pretty rare and often misdiagnosed syndrome – and it can be so nice connecting with people who share it. I’m sure you’re a blessing to others who share your diagnosis and feel comfort knowing they’re not alone!
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I don’t know anyone with POTS (that I know of) but I COMPLETELY agree with the seek a second opinion advice. I’ve gone through a battle trying to get my son properly diagnosed and so many doctors gave me bad information. It was a blessing when I finally found a good doctor that got us on the right medication and on the right track.
Wow, thanks for sharing your experience! I find this really interesting, because when I was younger I had irregular heartbeat issues which we could never figure out the cause of, and I later just brushed it off as anxiety. I have low blood pressure, and over the past couple of years I’ve experienced a lot of the same symptoms you mention and just generally feel unwell! I’m going to look more into this, so thank you! I hope you find some relief <3
I’ve never heard of these before. But it explains a lot about my sister who was also diagnosed as anemic in high school.
I’ve been researching so much the last couple weeks. I’ve recently had the high heart rate upon standing, I always have lower end blood pressure but not extremely low. Headaches, palpitations, I’m always so tired my mom jokes about how much I can sleep, I’m always freezing and can be in winter clothing while it’s 80 degrees outside (sometimes put the heater on my feet in the car .. and I live in Florida) I’ve mentioned this to my cardiogist (everything checked out except the high heart rate and failed the stress test and some pvc’s which could be hormone related) and I also mentioned it to my primary which neither have any experience or knowledge in POTS. I have 3 kids and experienced high heart rate symptoms after my second baby and then one day everything went away.. I just had my third baby 9 weeks ago and hello.. once again we’re experiencing these symptoms as well as other symptoms this time.. I’m hoping this eventually goes away and mine is all hormone related but I just feel like I’ll never feel the same again 😓 I’m sorry you’ve had to live with this, some people have it worse than me but I feel like crap and wouldn’t wish this on my enemy. Just thought I’d put my story out there and sending blessings to everyone suffering.
I have had the symptoms since I was a child but was not diagnosed as having vasovagal syncope until I was in my 50s after numerous trips to the emergency department after fainting when out, and having a tilt test. When they became more frequent I was sent to a cardiologist who after further tests diagnosed me as having P.O.T.S in addition to vasovagal syncope and early diastolic dysfunction. The only way to prevent the diastolic dysfunction from progressing to heart failure is to do aerobic exercise. As anybody with P.O.T.S knows just standing and walking short distances increases the heart rate, and causes breathlessness and overwhelming fatigue, it is impossible to do the sort of exercise that would improve my heart health. At almost 63 yrs of age I can see that my time is running out and I have had a chronic cough on exertion firstly, but has progressed to having it daily for over a year now. I am making the most of see ing my family regularly, eating healthily and having short walks. Life is short and every day counts.