In the United States, there is a rising awareness of Ehlers Danlos Syndrome (EDS), and its impacts. This is excellent news, as more individuals can start to recognize these traits, understand them, and get support as needed.
EDS comes in many forms and flavors, with different versions often having a different indicative letter beforehand. For example, Hypermobile Ehlers Danlos Syndrome is abbreviated hEDS, while vascular Ehlers Danlos Syndrome is abbreviated to vEDS.
Because EDS is often a cluster of sympotms rather than a particular thing, and multiple systems are impacted, it’s important to think about treatment and management not just as “one thing” either.
Today, I want to talk particularly about one of the more systemic issues that can occur in many of the EDS subtypes, including dysautonomia, blood pressure management, and hydration. A lot of big words, right?
One of the common symptoms in folks with EDS is postural tachycardia. Again, another big word. The simplest way I describe it to people is, when you stand up, or sit up, how often does your vision go dark for a few seconds? In more severe cases, some folks might lose control of their muscles, faint, or need to sit down to recover.
This happens because the body is having a hard time regulating blood pressure and blood flow to the brain.
But why is the body having a hard time? It comes down to one of the key components of EDS, which is the increased stretch capacity of tissue, rather than elasticity. EDS in many cases is thought to be caused by a collagen variation, and collagen is essentially the building blocks of us. So, these fibers are very good at stretching, lengthening, but when the load is released, they aren’t good at rebounding back. You can think of a rubberband that’s lost its spring. This is why many folks with EDS have stretchy skin, or have extra range of motion compared to other folks!
And this is going to happening in many tissues, including those of our blood vessels and tissues. Our heart actively pumps blood out to the tissues, and muscle contraction as well as the natural rigidity of our tissue helps compress the used (de-oxygenated) blood back to our heart. With EDS, not only does the skin stretch more, allowing more used blood to collect in our limbs, there’s less elasticity, so there’s less compression to help push it back.
So, if you’ve been sitting for awhile or been still for a bit, and suddenly move to stand up with the majority of your blood collecting in your lower extremity, your body si going to experience a “blood pressure drop,” because the blood that your body needs to mobilize is stuck more distally. And that means less oxygenated blood gets to your brain, leading to the ‘black out,’ experience.
This is often categorized as “dysautonomia,” where the body is having a hard time self regulating, maintaining its own blood pressure, temperature, and respiration rate.
The good news is that this is manageable!
For folks with EDS, one of the first things to do, to help manage this blood pressure shift, is to make sure you’re staying hydrated to make sure you simply have more blood in the system. So, drinking a minimum of 8 cups of water today. Some studies suggest a minimum of 2-2.5 Liters of water a day can be helpful, which is hard for most folks to achieve.
However, drinking just tap water might actually not be enough, as most tap water, filtered water, doesn’t have enough micro nutrients to optimize absorption. Instead, it’s recommended to drink water that has electrolytes mixed in, from trace minerals to sports mixes to improve absorption. Basically, our blood is composed of water + salts + cells. It is therefore easier to make more blood if we’re consuming water + salts, rather than just water.
The second reason these electrolyte or salt mixes are key is that folks with EDS are prone to actually have salt deficiencies, and not just table salt, but other salts like magnesium and zinc. These ions are key to not only help with absorption of water in our system, but also in building and maintaining our natural blood composition. Thus, getting a minimum of 8 grams of salt a day is enough to help reduce this “black out” quality of orthostatic hypotension.
In my experience, increasing salt intake adequately also helps with mood and energy levels, because your body is actually getting an adequate amount of what it needs. It also reduces anxiety, because rather than having to crank out adrenaline to manage blood pressure by squeezing those veins and arteries, it can simply rely on the salt.
So, what kind of mixes are appropriate?
I’ve had clients experience improvement with electrolytes like Propel, which I’ve found is actually relatively low in sodium, potassium, and magnesium compared to some others. But if you’re less concerned about salt deficiency, and more concerned about hydration, this adds enough electrolytes to help boost absorption.
For more Sodium Chloride heavy, LMNT is a more expensive but salty and tasty. It has 1000 mg per packets, as well as a good amount of sodium and potassium. However, it is lacking in zinc and calcium as well as other trace minerals and vitamins.
Liquid IV is another electrolyte mix, and unlike the other two, it also includes B12 and B6. In a study of adolescents with dysautonomia and EDS, they were found to have lower blood serum levels of B12 and B6. Unfortunately, this study doesn’t necessarily recommend what vitamin intake is recommended, but simply that supplementation may be appropriate.
Now, all of those range in price per packets, anywhere from $1.00. per packets to $2.50. The World Health Organization actually has emergency electrolyte mixes available, to help folks with hydration, called TRIORAL. They contain some sugars, sodium, and potassium. No magnesium or zinc, and the sugar might be hard on some people’s digestion, but you can get 100 packets for around $40, make it the most bang for your buck.
When working with clients, one of the first things I focus on is making sure that there’s adequate hydration, as well as adequate salt intake, making sure there’s a diverse intake of salts and an adequate enough to make there needs.
Now, bear in mind, this is not a one size fits all. Some folks are prone to kidney stones, so an increase in salt could trigger increased risk of kidney stones. In that instance, I usually use Trace Minerals, which is lower in sodium compared to others.
Additionally, I am not a nutritionist. This blog post is not meant to replace the recommendations of a medical doctor or a nutritionist, and any intentional changes in your diet should be confirmed with your care team before being integrated.