Yes, thank you. I have EDS as the cause of POTs. All the symptoms are invisible for both issues, that is until one turns white and collapses. Happy Easter 🐣🐰
I have EDS (the hypermobility type) + POTS + NCS (another form of Dysautonomia) + a genetic clotting disorder. Plus Chronic Fatigue Syndrome + Fibromyalgia kind of poking their head in there too.
On the outside, I look like a healthy young woman. On the inside, my body is a complete mess!!
Yikes! That sucks. I have one other friend who has the whole EDS ME/CFS, fibro gamut. Should we blame evolution for not getting its shit together enough to have bred out all this stuff by now? I mean billions of years and we still have to put up with this. Really??
I’ve never heard of NCS. I will google it. The clotting thing sounds dreadful.
I think I look amazing when I look in the mirror – hand held, of course, as I can barely stand still in front of the bathroom one long enough to brush my hair – so I don’t begrudge people telling me I look so healthy. That is if they also acknowledged how debilitated I am. Old folks get it more than people my own age or younger, as they have so many invisible issues to deal with too. It is crap that when we should be out there doing stuff, we are forced to live the lives of sick octogenarians . 🙁 I know quite a few people who are 85 plus years old, who have a better quality of life than I do.
Haha, I don't believe in evolution, so I can't lay the blame there! But I totally agree that it sucks!
NCS stands for Neurocardiogenic Syncope. It's also known as Neurally Mediated Syncope (NMS) or Vasovagal Syncope. I mean really, why do we need THREE names for the same thing?!
Basically it means that my blood pressure randomly drops super low. That causes my heart rate to go through cycles of super fast, and then super slow, and then super fast… trying to compensate. In my case, after it's done a few cycles of that, it just gives up, and my heart completely stops (asystole). I had a pacemaker implanted last year, which fixes the super slow heart rate and flatlining issues. Unfortunately, it can't do anything about the blood pressure drop, or the super fast heart rate. I take Ivabradine (Coralan) for the tachycardia, but it only helps to cap my resting heart rate – it doesn't fix the big jumps when I change posture.
The clotting thing just means I can't have medications that raise your risk of clotting, as I already have a high risk of clotting. And I have to be careful with anything that annoys my veins (having blood taken, surgery, IV treatments with high doses of nutrients etc).
I don't mind when people tell me I'm looking wonderful. I do mind when they think that it means I'm all better! My usual reply to "You're looking so good!" is "My body is tricking you!"
I have a clotting disorder as well. I carry factors 2 & 5. I have everything POTS, ED, poly and periphial neuropathy, Fibromyalgia and diabetes 1 &1/2.
For more information about this infographic series, go here.
Reflections Of A Bear 
My life’s story in infographics! Did you make all these yourself? They are brilliant.
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I sure did make them all myself! I’m so glad that you like them, although I’m sorry that you can relate ❤
xx S.
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Yes, thank you. I have EDS as the cause of POTs. All the symptoms are invisible for both issues, that is until one turns white and collapses. Happy Easter 🐣🐰
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Happy Easter!
I have EDS as well 🙂
I have EDS (the hypermobility type) + POTS + NCS (another form of Dysautonomia) + a genetic clotting disorder. Plus Chronic Fatigue Syndrome + Fibromyalgia kind of poking their head in there too.
On the outside, I look like a healthy young woman. On the inside, my body is a complete mess!!
LikeLiked by 1 person
Yikes! That sucks. I have one other friend who has the whole EDS ME/CFS, fibro gamut. Should we blame evolution for not getting its shit together enough to have bred out all this stuff by now? I mean billions of years and we still have to put up with this. Really??
I’ve never heard of NCS. I will google it. The clotting thing sounds dreadful.
I think I look amazing when I look in the mirror – hand held, of course, as I can barely stand still in front of the bathroom one long enough to brush my hair – so I don’t begrudge people telling me I look so healthy. That is if they also acknowledged how debilitated I am. Old folks get it more than people my own age or younger, as they have so many invisible issues to deal with too. It is crap that when we should be out there doing stuff, we are forced to live the lives of sick octogenarians . 🙁 I know quite a few people who are 85 plus years old, who have a better quality of life than I do.
My name is Kate, by the way.
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I’m Sarah. Nice to meet you Kate! ❤
Haha, I don't believe in evolution, so I can't lay the blame there! But I totally agree that it sucks!
NCS stands for Neurocardiogenic Syncope. It's also known as Neurally Mediated Syncope (NMS) or Vasovagal Syncope. I mean really, why do we need THREE names for the same thing?!
Basically it means that my blood pressure randomly drops super low. That causes my heart rate to go through cycles of super fast, and then super slow, and then super fast… trying to compensate. In my case, after it's done a few cycles of that, it just gives up, and my heart completely stops (asystole). I had a pacemaker implanted last year, which fixes the super slow heart rate and flatlining issues. Unfortunately, it can't do anything about the blood pressure drop, or the super fast heart rate. I take Ivabradine (Coralan) for the tachycardia, but it only helps to cap my resting heart rate – it doesn't fix the big jumps when I change posture.
The clotting thing just means I can't have medications that raise your risk of clotting, as I already have a high risk of clotting. And I have to be careful with anything that annoys my veins (having blood taken, surgery, IV treatments with high doses of nutrients etc).
I don't mind when people tell me I'm looking wonderful. I do mind when they think that it means I'm all better! My usual reply to "You're looking so good!" is "My body is tricking you!"
xx
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I have a clotting disorder as well. I carry factors 2 & 5. I have everything POTS, ED, poly and periphial neuropathy, Fibromyalgia and diabetes 1 &1/2.
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Wow, your body is a bit greedy! Tell it to leave some illnesses for other people!
*hugs*
I carry factor 5, and have NCS + POTS/OI, EDS, CFS/ME, Fibro, Adenomyosis, and am looking into MCAD diagnosis.
No diabetes though (thankfully!).
I didn’t even know it was possible to have types 1 AND 2! You poor thing 😦
xx S.
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Reblogged this on Imagine the possibilities and set yourself free..
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