EDS is a connective tissue disorder. The body produces a different type of collagen, one that is more stretchy.

The biggest effects happen in the following ways:

Tendon/Muscular Balance

Because the tendons are “extra stretchy” it makes for cool party tricks as a child, but can also lead to the body being dangerously under supported. The tendons do not do the work of keeping structure like they should, leaving the muscles to do more work.

When taking a step your muscles have to over compensate and contract further to stretch the tendon in order to get the leg to move. This is why building muscle is easy when weight training - you’re working your muscles 30% more, doing the same movements. This can lead to chronically sore, tight muscles. But DON’T stretch them out. Your body has over compensated for a reason. Preworkout stretches and massage can relax the muscles, making physical activity less safe because you don’t have the support or control people with normal collegian do. It can be dangerous especially in sports, increasing the risk of rolling ankles, and even dislocations and fractures.

People with EDS are prone to sitting more casually, leaning, and prefer sitting with the legs up, or sitting with one leg curled under them. This is because the muscles are sore. When non EDS people stand their tendons are keeping their balance. Because your muscles engage more, standing and sitting upright are a constant workout. Standing too long will even begin to burn inside your muscles - and that time frame will be much shorter than other people. Because of this the body has learned how to rest in other ways. If it cant lean it will balance your weight on the bones and joints, which leads to irregular posture.

Because your muscles have to engage roughly 30% more, your body is eating through protein that much faster.

Pardon me as I rabbit hole with you for a second and let my marketing nerd come out: In America, in the 90s, major brands like Kraft were bought out by cigarette companies. As you know these companies took a fairly begin thing, the tobacco leaf, and pumped it full of chemicals to make it addictive, and cancerous. They did the same thing with our food. High levels of salt, sugar, and MSG make the food addictive. They also removed a lot of protein - which makes us feel satisfied after eating. If eating doesn’t satisfy us, we will eat more of it. So Americans are already chronically under in their protein intake - and fatter for it.

So you as someone with EDS are not even getting enough protein for a regular person, when you actually need considerably more to function. Lack of protein leads to crashes - discussed down below.

Posture

EDS are prone to “duck posture.” It starts in the feet. People with EDS’s feet will often rest their weight toward the interior arch and rely on the toes for balance because the tendons are not supporting the ankle and therefor not encouraging the outside foot and heel to keep the person upright. For this, a stiff sneaker is recommended, one that supports the ankle, has thick padding, and doesn’t allow the body to rest on the arches as much.

Going up the body, this inner arch collapse only adds to the bad posture when combined with knee locking. Because the tendons are not tight at the knee, the knee will push back further than it should. The person then balances their weight on the joints, rather than holding themselves balanced with the tendons.

Locked knees leads to an anterior pelvic tilt, the pelvis rotates forward, causing the butt to stick out further. Especially in women. This causes lower back pain and pinch that is not relieved by cracking - it leads to the muscles to be over worked and sore, they may burn quickly.

Rotated Pelvis leads to the bell sticking out further, and the back then over correcting leading to a big arch in the back. Stomach will stick out, and breasts may sit higher on the torso. This can lead to a hunch back or arch in the upper back - especially in men. Both genders will ultimately have a “backwards neck” because it rests forward and “hangs” off the spine when the muscle is resting. This bad posture will get worse over time and lead to damage. It is worth it to do things that support your body, keeping a camping chair in your trunk, giving yourself permission to lean or sit, being mindful to engage your muscles even if it hurts.

Spinal pain and Chiropractic Care

A person should not seek the help of Chiropractic care. Chiropractors will say they know what it is and then still treat you like any other patient. When doing imaging - your spine and neck will look terrible. But what they don’t know is that your spine is not fixed like other patients. Their cartilage is rigid, yours is not, yours is more like a stack of marshmallows. Which means the horrible x-ray they do in a regular patient could take years to correct, but in you, you may just need to stand upright. But for many EDS, you don’t know what good posture is so you don’t know how. Good posture may even hurt. When I got scans on my “backwards neck” my chiropractor was incredibly sympathetic to “how much pain i was in” and was shocked that I couldn’t feel it. And while there is some long term damage showing in my neck, the next set of X-Rays showed “remarkable improvement” and eventually a “fully recovery.” But I simply didn’t know how to stand right, and each adjustment I went to left me in pain for at least a day because it stretched out muscles that I actually needed to stay tight.

Vascular System (Heart, veins, arteries) and other systems

Everything in your body uses collagen therefore everything is a little extra stretchy. You may hold your breath longer than others. You may also be prone to cysts because toxins get trapped inside and inflate the organ walls. You may be more inclined to hernias and prolapses.

With EDS your veins will be stretchier too - which means it takes more pressure to push blood through. High blood pressure is common. One indicator that it is from EDS though, is how the blood pressure medication makes you feel. It will make people a little tired, but if you function perfectly fine at 170 over 100, and feel like all life has left you at 120 over 80 - it may be because your body actually needs the extra pressure to even function. This might be a relief because that means you aren’t lazy - but this is not your redemption. It becomes a question of your quality of life over living a long life. There isn’t a treatment, so if this gives you the permission to stop your meds to begin living again, but understand that the heart and organs will still reap the damage of what high blood pressure entails, even if it needs it to operate correctly.

Because of the high blood pressure, high probability of being overweight, leg swelling, fluid pooling (see below), and frequent “Crashes” (to be explained below) The person is OFTEN diagnosed as per-diabetic before sugar irregularities arise - which blames the weight for your problems rather than your collegian. But remember that this is a downward spiral scenario. The high blood pressure it causes may lead to medications that make you tired, in addition to protein depletion which make you overweight, which lead to even higher blood pressure. Blood pressure medications like lisinopril also cause diabetes after about 20 years of use.

Fascia and Lymph

Fascia is the space between skin, fat, cells and muscles. When eating a steak the white connective tissue in the meat are the fibers that run through the fascia layer. Through your fascia fluids hydrate and flush toxins that are then filtered by the kidneys. With EDS your fascia fibers are extra stretchy which means fluids don’t move as easily - especially against gravity. Fluids can pool and build up in the legs through the day. This is what turns the feet red, or causes swelling much like those with diabetes.

But here’s the difference between diabetes and EDS:

• If pressing your leg leaves a dent that takes time to rise - that is pitting edema - related to diabetes

• If feet turn red/purple especially when standing, and improve when you elevate legs that is the pooled fluid that is now moving again.

• If swelling comes with neuropathy, and ulcers - more likely diabetes. But, EDS is prone to limbs falling asleep, but due to posture.

EDS pooling creates a very distinct and uncomfortable physical state. It can feel like their legs are heavy, achy, or full of pressure with a dull, internal throbbing rather than sharp pain. The lower legs and feet may become purplish or blotchy, often cold to the touch, while simultaneously feeling overheated or tingly. Standing for even short periods can trigger lightheadedness, brain fog, a racing heart, and a sudden wave of fatigue, as if all energy is draining out of the body. Some describe feeling disconnected from reality, overstimulated, or panicky, not from anxiety, but because of the body’s poor regulation of blood flow and heart rate.

These symptoms are quickly improved by laying down and elevating the legs. After work, or during lunch, it is recommended to take 20 minutes to elevate the legs to allow fluid to move. This not only relieves the pressure, it aids the kidneys in keeping the system clean, and it prevents crashing later in the day.