It's very common for those with Ehlers-Danlos Syndrome to also have POTS syndrome. In most cases, we have it as a secondary condition. In truth, nobody really knows why its so common to have this condition along with EDS. Click here for a bit of reading on the theories.
I have come up with various different ways to understand it in my head, with the help of my doctors. But they's just theories, so I'm not going to put them in writing. POTS is a condition where the autonomic nervous system malfunctions, it can't adjust to changes in environmental factors and posture. It's characterised by a racing heart when someone stands up, chronic and profound fatigue, blood pooling in the abdomen and extremities and more. The generally understood link to EDS is loose connective tissue and 'nervous system damage/malfunction' which sort-of helps people like me create a meaningful link between the two conditions in our heads, but isn't a properly researched and explained reason. POTS was the first major chronic condition I was diagnosed with that made any sense. The first one that really effected my every day life in a big way. It explained maybe half of my symptoms. In the past, it has had me hardly able to stand up without holding on to something. It's had me in bed 15-20 hours of the day. It's nearly cost me my ability to work. However, at the moment I consider it 'controlled'. It's still there. I feel the symptoms. I need medication. But with the management tools I have in place, it's at a point where I can go about my day without being knocked down by it every 2 seconds like I used to be. I consider myself very lucky. So - I write to clear something up. A lot of words are thrown around to describe 'controlled' POTS. POTS like mine that is at a point where a person can go about their every daily lives without showing the symptoms in an obvious way. POTS that perhaps, with medication on board, doesn't even show on simple clinical tests.
Remission. Cured. Gone. Reversed.
Words that do not begin to cover what a person does every day to keep their POTS controlled. how aware of it they still have to be, even if they have no daily symptoms. This has happened because there's no globally followed clinical pathway for POTS. You don't get to sit in an office with a doctor like if you had Cancer and have them pronounce you in remission, or cancer free. We don't get told that your procedure for "x" was curative. There just is no agreed-upon phrasing.
Here's the thing. There's no cure for POTS. Once you have it, you have it and it's something you're going to have to be aware of and manage for life even if you come to a point where you have no symptoms. And yes, even Doctors get this wrong. Doctors will tell patients "You don't have POTS any more" when they don't meet the clinical criteria. This is incorrect. That person still has POTS, it's just well-controlled. I've heard countless stories of people who had been symptom free, completely un-medicated for years, and then 'relapse'. I'm not trying to be bleak here, but as far as anyone knows POTS is part of you once you're diagnosed. So it spreads dangerous false hope to pronounce someone 'cured' or spread a story about how you 'cured' your POTS. In my opinion, there should only be 3 words used. "Uncontrolled", "Controlled", "Remission". These words are words that are used widely in the medical community for many other conditions. You might describe someone as having 'well controlled diabetes'. However they're words that can be used for any disease or condition, as long as they make sense with how the condition works.
Uncontrolled POTS This would be the kind of POTS someone generally has early on in their journey. Or with a lack of proper care - or rotten luck - some (to be honest, many) people remain un-controlled. I would describe it as having a very fast heart rate upon postural changes or in heat, a bad tolerance to things like walking, cold, food, etc. Possibly severe cases may need IV fluids regularly and/or bed rest. A lot of these people may use mobility aids due to their unpredictable symptoms. Controlled POTS This is where the lucky ones land once they've engaged with doctors that know what they are doing, complied with treatment recommended to them, and also had the fates in their favor. So much is not understood about this syndrome that medicine and compliance is often not enough. I would describe it as quite possibly still needing daily medication to control things like heart rate and blood pressure, perhaps nausea and pain as well. However with this medication and regular movement/exercise, one can make plans, go about their day, without unpredictable symptoms keeping them tied to their house or bed.
This is the word I strongly urge anyone to use instead of 'cured' when they have been lucky enough to reach a point where they experience no symptoms - without the need for medication. So this would mean a normal heart rate on postural change, no abnormal blood pooling or fatigue (although if you've got EDS there's no escaping this anyway!), and any other symptoms previously attributed to POTS having subsided. For those with many conditions, particularly the POTS, MCAS, EDS trifecta, it can be really hard to tell if your POTS is causing symptoms or if it's something else. so declaring POTS in remission is a complicated business for us.
Descriptive words like this are more important than you will ever understand until you've lived with long term illness. Using an off-hand phrase like 'wait, I thought you were cured?' can be rattling for people like us because it minimizes what we go through on a daily basis. It assumes that we have been able to live a completely normal, worry-free life while not showing obvious symptoms of our illness. You'll find in 9 cases out of 10, this is the opposite of the truth. If we say "my POTS is in remission" or "my POTS is under control" please, at the very least, parrot the words we use and don't assume what they mean without asking. And believe me, this is not something that's easy to google. Ask us. Or refer back to this post. Because these little words matter.
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For more info on POTS - click here
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