Hypermobility Syndrome was something I’d never heard of until I was diagnosed with it.

I had dislocated my shoulder playing Animal Crossing (yep, that’s a story I have!) and went into physical therapy to get it back functioning properly again. It was a long process and it hurt so bad. But, I guess it was worth it because I got diagnosed with something new and another piece of the puzzle fit into place. It turns out, I have almost all the classic Hypermobility Syndrome symptoms.

In this post, I’m going to go over Hypermobility Syndrome symptoms and how to cope with them.

What is Hypermobility Syndrome?

Hypermobility Syndrome is when someone has a wider range of motion than usual in some or all of their joints. Sometimes, people with hypermobility syndrome can move in ways that other people cannot. I know that, for example, I can bend my thumb all the way forward and touch it to my wrist, and, apparently, most people can’t do that. I was also super stretchy as a kid — I was in gymnastics and could bend in a bunch of different ways.

This can lead to a whole host of issues, all of which I will be going over in detail.

Hypermobility Syndrome Symptoms

Joint and Muscle Stiffness

This one is exactly what it sounds like — you get stiffness in your joints and muscles.

For me, this is a huge one. Every day when I get up I’m so stiff everywhere, and even when I’m just getting up from sitting I can barely walk. Seriously, I look like Frankenstein’s Monster trying to shuffle around until I can walk properly. Sometimes it also just comes out of nowhere and I get a bit of a limp while I’m already walking. My back stiffens up too quite often. In short, it’s a whole lot.

Injuries

This can be anything from rolling your ankle to dislocating your shoulder, both of which I’ve done.

The best way to cope with these is to just be gentle with yourself. You’ll get injured sometimes, it just happens. Take care of yourself, use ice and heat, take medicine, and don’t let yourself feel stupid for getting hurt. I know I can feel that way sometimes, but just remember that it wasn’t your fault and that everything is okay. You have a syndrome that makes it easier for you to get hurt — not your fault at all.

Loss of Balance and Coordination

I have always been the most clumsy person I know. It was always a “cute” thing for my peers to joke about with me, but now I know that it’s not just a personality trait. It’s definitely gotten worse as I’ve gotten older as well. I run into things all the time, and I used to fall so much that I have taught myself to catch myself now before I fall. Trust me, it takes a lot of practice.

The best way to help with this is to move slowly when you’re doing something that could make you fall. Just be as aware of your body as you can, and know what you can and can’t do with it. Sometimes you’ll have to sit things out, and that’s okay.

Fatigue

This one is something I am no stranger to. Almost everything I’m diagnosed with comes with fatigue, so it’s safe to say that I’m always experiencing this one. In fact, the amount of naps I had to take in between writing sections of this blog is a bit ridiculous to me.

For this one, you really just have to get as much rest as you can. I take naps often, and I rest on days when I don’t have to do anything. This one is the hardest to cope with for me. It’s really hard to be tired all the time. I want to do things but I can’t because of how tired I am. I want to write a blog post, but I’m too tired so I have to nap. Or I want to hang out with my friends, but I’m too tired, so I have to nap. It’s hard, but it’s important to listen to your body. If your body needs rest, give it rest!

Dizziness and Fainting

I experience this one with my POTS. If you don’t know what POTS is, don’t worry — I go over that later and how it’s connected to Hypermobility Syndrome. But if you know what POTS is, you know why this one is connected. I get dizzy and almost faint all the time — it’s a real problem. I’ll be walking around somewhere and all of a sudden have to sit down because I feel so bad.

You have to be really, REALLY careful with this one. It can sneak up on you at any time. For me, it happens when I stand still for too long, or when I bend over to do something. Again, you’ve got to be really careful. Identify and avoid your triggers, and do your very best to take care of yourself.

Hypermobility Syndrome’s Connection to POTS and Fibromyalgia

Now, this is an extra section I wanted to add because I was fascinated by it. When I was diagnosed with Hypermobility Syndrome, I had no idea that it would lead to a diagnosis that would change my life — POTS. I had already been diagnosed with Fibromyalgia, and when I told my Neurologist that I had Fibromyalgia and Hypermobility Syndrome, she told me I might have POTS as well. Apparently, it’s a trifecta — if you have two of them, you might have the other as well. So, I went to go get tested for POTS, and sure enough, I had it.

If you don’t know what POTS or Fibromyalgia are, I’ll give you a quick rundown. (Definitions are expanded upon from this post.)

What is POTS?

POTS stands for “Postural Tachycardia Syndrome”, which basically means that when you sit or stand (any change in posture), your heart rate can go up wildly.

POTS is something that has really affected my life in a big way. I can’t bend over to get anything from the bottom shelf without my heart rate increasing. I can’t roll over in bed sometimes without losing my breath. It’s really very hard to cope with.

What is Fibromyalgia?

Fibromyalgia is a disorder where you experience pain all over your body, fatigue from said pain, and then moodiness from said fatigue.

Fibromyalgia has gotten me just as bad as POTS has. When I stand or walk around for too long, I get extreme pain in my back, neck, hips, and shins, and it hurts so bad I get out of breath. I have to sit down and it takes me forever to catch my breath.

Back to what I was saying…

I bring all this up just to make you aware that if you are struggling with any of the two, I would go get the third checked out. It can be very important to know these things about yourself, not only so you have an accurate picture of your health, but it will also help you mentally. Before I was diagnosed with all the stuff I’ve been diagnosed with (you can check out this post about all of my invisible disabilities if you’re interested), I felt crazy. I felt like I had no idea what was going on, and I felt like it was all in my head. Let me tell you, if you feel that way, you are not alone — and more likely than not, you aren’t crazy.

In Conclusion…

Hypermobility Syndrome is an interesting syndrome. Again, I’d never heard of it before until I was diagnosed with it. The diagnosis changed my life because it led to another diagnosis for me. I said it before but I’ll say it again — if you’re dealing with two of the three that I talked about in the trifecta, PLEASE go talk to your doctor about being tested for the third. It could change your life just like it changed mine.

I hope you found something useful to you here, thank so much for reading!

— Bee <333