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Advice / Support as I’m not sure if I may have POTS


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Hi everyone,

For a number of years now, since my mid teens, I’ve been having issues with my legs. I have attached photos of my legs after standing for 10 minutes from a lying position. 

My resting heart rate was 80bpm (I’m a 25 year old healthy female) and it increased to 106bpm upon standing. I also noticed that it increased speed and slowed down in seemingly random bouts. 

 

When standing, my legs can get very sore and uncomfortable feeling, like they are throbbing and stinging. They were also very hot when I stood from lying down. I’ve found that I get pins and needles very easily too. 

 

Often, when I stand from sitting, I feel very dizzy and my vision has gone black numerous times with this  

 

If I get a moderately warm shower or bath, they turn bright pink and purple, and do this with any temperature change. I’ve also noticed that my legs are often very blotchy and mottled. 

 

I’m very self conscious about the colour of my legs and have been experiencing these symptoms for a long time now. I was even diagnosed with body dysmorphic disorder when I was 18 by a councillor because of the distress the symptoms caused me. 

 

Any advice and guidance would be greatly appreciated. 

 

Thank you,

 

Emma. 

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Hey, I get that too in the shower. Sometimes on my feet, but mostly on my knees. I'm quite overweight, so it might be worse and the fat is hiding some of it. That is called Livedo Reticularis and it can be anything from normal in some people, to being one of the symptoms of having the autoimmune disorder I have; called "Antiphospholipid Antibody Syndrome. I will post a few links for you about this condition. 

Here is a link to the mayo clinic's description of Livedo Reticularis: https://www.mayoclinic.org/livedo-reticularis/expert-answers/faq-20057864

 

Here is a link to what APS is: https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831

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Hi - I had this all of my life, including my teens. It Is Livedo reticularis ( it is in my medical record ) and it is caused by blood pooling in the legs. Commonly this will happen if you take showers or baths or stand/let your legs hang down/sit etc, but not in all people. I believe - this is not anything I have read but is probably true - it happens in people with dysautonomia because the circulation mechanism does not work and our bodies are not able to pump the blood back up towards the heart.  

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Have you taken very precise measurements of your heart rate each min?

For example : 10 min laying down => take heart rate

standing => take heart rate

1 min standing => take heart rate

repeat until the 10 min mark if possbile.

What are your results? If you have a sustained increase in heart rate, you could have pots. But in the absence of that, it could well be something else. 

Note : You may also want to take your blood pressure at the same time as your heart rate for additional data.

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If you're blacking out and have pooling in your legs (which is what the photos look like), you might want to check your blood pressure when sitting/resting and then after standing.  When measuring the difference between sitting and standing for both heart rate and blood pressure, make sure you stand for  several minutes before taking the measurement.  The heart rate swing you reported is under the POTS standard which is a sustained increase of 30 bpm or more.   

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Don't let the poor man's tilt test, done by you, or a doctor at a doctor's office, determine anything. I have very extreme pots and my poor man's tilt test never went over the 30 point increase mark ( I did it 20 times at least). If you suspect pots you have to find a way to get a proper TTT before making any conclusions. 

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