Explaining What's Wrong With My Joints | How hEDS Affects My Life

Are you curious about connective tissue disorders? Or just want to learn about one of my chronic illnesses? Today I'm going to tell you about how hypermobile Ehlers Danlos Syndrome affects my body and my life. And it just so happens to be EDS awareness month, so huzzah!

Watch the video below or read on for the full transcript.

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According to the Ehlers Danlos Society, "the Ehlers Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue proteins."

EDS has multiple types, and I have what was formerly called type three, but is now simply called the hypermobility type. The name, however, doesn't even remotely do justice to how much this condition affects me.

Before we get into those details, however, let's start with the basics. So what is connective tissue? According to Wikipedia, "connective tissue is one of the four basic types of animal tissue, along with epithelial tissue, muscle tissue and nervous tissue.... Connective tissue is found in between other tissues everywhere in the body, including the nervous system." Basically connective tissue is the scaffolding that holds the human body together, and in those of us with connective tissue disorders, our genetic code holds a faulty recipe for the connective tissue proteins. So instead of sturdy and reliable connective tissues, our bodies make stretchy and elastic connective tissues.

Every system in the human body is dependent on connective tissue. Not only are our joints, skin, teeth, eyesight, hair, and nails effected, but so are our digestive, vascular, and nervous systems. Long story short, nothing in the human body is safe from faulty connective tissue. It really does affect everything.

If you're someone with EDS or another type of connective tissue disorder, please comment below and share one of the unique ways it affects you. I want people to be able to go into the comments and learn how much this condition affects us, so we can finally do a way with the stereotype that connective tissue disorders only affect the joints.

Now that you've had a crash course in Ehlers Danlos Syndrome, I want to share with you some of the ways it affects me. Let's start with the really obvious joint stuff first because my ligaments and tendons, which are connective tissues, are faulty. My joints tend to be really loose and hypermobile, AKA hyper flexible. That results not only in a lot of pain, but it can result in subluxations or dislocations of that joint.

A dislocation is where the joint fully dislocates, like either bone on either end just [SAD YANKIONG NOISE], and then a subluxation is a minor version of that. All it takes for me to sublux my hip for example, is rolling over in bed. It's not great.

As a dancer, it's actually really frustrating because I have to work so much harder to hold my body together, especially when I do partner dancing, where another person has the ability to dislocate my joints at any given time. So I always have to hold myself together with a lot more muscle bracing than an able-bodied dancer, which is frustrating. This is how much I love dancing. I suffer for it. I love it, but I suffer for it.

Another thing, I deal with, with my EDS is chronic pain. Which is probably a given, but it's not just my joints. It's also my muscles and particularly my digestive system, but I also get lots of headaches. Also because of my digestive issues I have Irritable Bowel Syndrome (IBS), but that's the least of my digestive problems. Yay. We'll get to more in a second.

I also struggle with low blood pressure because connective tissue is one of the things that makes the vascular system sturdy, so my blood vessels and veins literally have a more difficult time squeezing to increase blood pressure, which is one of the reasons why I have another comorbidity that'll get to in a second.

I also have chronic fatigue. So that's why I talk about the spoon theory a lot on this channel, because I have significantly less spoons or usable hours than an able-bodied person. I have to recover from basic things like showering. Making a meal? I have to recover from. I also have to recover from eating because eating draws blood to your digestive system, and as I have already started to establish, my body is really shit at re-circulating blood. So if it's all in my digestive system, it's not anywhere else helpful for the most part.

I also struggle with brain fog, which is kind of a correlation with the chronic fatigue, but also the poor circulation, because my brain literally has a hard time getting enough blood and oxygen and nutrients. Yay.

Another thing I struggled with is poor and/or slow healing and a weakened immune system. So for example, before I had my Ehlers Danlos diagnosis, I found myself getting tested for blood clotting disorders a lot because my blood has a hard time clotting.

Basically, I'm not very put together on a biological level. It's great.

But it also takes me significantly longer to recover from viral or bacterial infections. If I get a cold, it knocks me out for at least a month. And because of a comorbidity that I will also get to in a second, that would then lead to a sinus infection, which would then lead to a course of antibiotics. So like, the cause and effect chain of misery, starting with the common cold, could put me out for the count for up to three months.

As a side note, because of my poor immune system, I have been in lockdown in this apartment since March 13th, 2020. I am in the high-risk group because I have all the things. My body's not very happy. There's not only concern that COVID could potentially turn fatal for me if I were to catch it, but it could also pour lemon juice on the paper cut of my chronic symptoms because people who survive COVID, but then experience long COVID symptoms, those tend to be forms of dysautonomia (which I will get to in a second, and I already have that), and so there's a potential that if I were to get COVID and survive, my existing chronic conditions could get worse! [AGH!]

I can't wait to get my second Pfizer vaccine. I've already had my first. Can't wait for the second. And can't wait for at least a month to go by, and then I'm going to do the very luxurious thing of getting a hair cut. With masks. Of course I'll wear a mask. Definitely. But yeah, haircut sounds nice. Anyways. [AHEM]

Another thing that connective tissue does in the body? It doesn't just hold your joints together. It doesn't just laminate your, your muscle to your bones, and then your fat to your muscle, and then your skin into your fat. It also is the netting that suspends your organs inside your torso. So I experience a lovely little thing called organ prolapse.

For those of you uterus owning humans out there, you have probably either heard tales of or experienced what uterine prolapse is like. I've never had a child. I never plan on having a child. Instead, I have a genetic connective tissue disorder, which encourages the prolapse. Good times. [NAH]

Now onto the co-morbidities that tend to go hand in hand with Ehlers Danlos Syndrome. The first of which is a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS), and that is where my blood circulation problem is so bad that my heart has to go high into a tachycardic rhythm, AKA high beats per minute, in order to circulate my blood because my blood pressure is not compensating properly.

Then there's the added complexity that there are some unknowns in Postural Orthostatic Tachycardia Syndrome. They're studying it so much. I can't wait to find more answers. But there's also a autonomic nervous system malfunction where even if my blood pressure were magically to be fine for a few seconds, my body's like, "No! Thou shalt have adrenaline! And thine heart shall beat at a hundred plus beats per minute!" (If not up to 200 when you're dancing, even though you're very cardiovascularly fit for a person of your age.) Because you're used to your heart running a mile minute. For example, standing and brushing my teeth? 130 beats per minute. Weee! Dancing to a medium speed song? (When one could, you know, go out and dance. It's been so long.) Medium speed song would take my heart rate up to 200 sometimes, and usually any faster song and my heart rate monitor would cease being able to get a reading. That's always a good sign.

Anyways, long COVID tends to look like POTS, AKA Postural Orthostatic Tachycardia Syndrome. And that's one of the reasons why I'm just hiding in my apartment with my partner and my two cats. Excellent.

All right, I'm going to run through the other co-morbidities really quickly, 'cause I don't want this video to go on for 5 million years.

So gastroparesis. That's where the valves at the entrance and exit of my stomach are quite faulty. Again, they're connective tissue so, you know, they're bad at their job. After I have a meal, it takes me hours and hours for my stomach to actually empty. So if I have like a reasonably sized meal, I'll still feel it up my throat. Super pleasant. That causes teeth problems because I have acid reflux because the valves are faulty.

Also Median Arcuate Ligament Syndrome or MALS. Chronic sinusitis, which I had my entire life. And finally in 2020, my ear nose and throat doctor had gathered enough evidence to prove to my insurance that I needed sinus surgery. So I could breathe through my nose! So I can stop having chronic sinus infections! And so magically, I had sinus surgery in July of 2020. I had never known what breathing through my nose felt like before that. And I was 34. Like seriously, breathing through my nose is magical. So the connective tissue in my sinuses was haphazard and almost like overgrown in places, so I was like breathing through a straw and... No good.

And then we've got Mast Cell Activation Syndrome (MCAS), which is where your body's allergic response system is hypersensitive, and can't decide what it's allergic to. It could be allergic to yesterday's leftovers today, but not yesterday when you ate it originally, and stuff like that. I'm really grateful that my Mast Cell Activation Syndrome does not present in an anaphylactic fashion, but I know that is incredibly common for a lot of people with Mast Cell Activation Syndrome.

And then la pièce de résistance: PTSD from medical trauma, and depression. Yay.

So now you know a great deal more about my body and the symptoms I deal with every day. And if you've been around a while, you may now be able to see why helping people such as myself go from stuck to unstoppable is so important to me, because I spent way too many years of my life without the help and accommodations I needed. And if I can help just one person not waste years of their life in that same pursuit, everything I do will be worth it.

If you want a better understanding of what it is I do as a coach, check out my free Masterclass where I teach you three mindset shifts and one simple three-step system to help you overcome procrastination and resistance. Because procrastination and resistance can be really hard on those of us with chronic illnesses.

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