Hypermobility spectrum disorder

Dr. Ina Stephens is Associate Director of the UVA Health EDS and Hypermobility Disorders Center, who we are so proud to partner with to bring you conversations that connect cutting-edge science with practical, compassionate care for our community.

This conversation includes so many topics, including fermented foods and MCAS and histamine, Munchausen's by proxy, medications and supplements for migraine, why diagnosis matters in children, and what to do while you're waiting to get assessed for a possible hypermobile EDS or HSD diagnosis.

This podcast is for education only, and it's not a substitute for personalized medical advice.

Stay to the end for a hypermobility hack.

I think it's mostly based on cardio as well.

Okay, no problem.

Um, the second point that I wanted to make was I was doing a literature search the other day, and I came across a study looking at nutrition in people with hypermobile EDS and HSD, and it was so interesting because they were talking about how in that group of people they were eating, um, high amounts of protein, generally speaking, um, but they were eating really low amounts of fiber.

So it's really interesting that you pointed that out as one of the things that can contribute to dysbiosis, um, because I don't think a lot of people think about that, even though when I had Lorna Ryan on the podcast, she brought that up as a factor.

And I could think of so many different directions that that could go.

And I think doing an entire episode geared towards family and friends to understand about connective tissue disorders like hypermobile EDS and HSD is a really good idea.

So if you also like this idea, I'm going to give you a little bit of information now, but I also would suggest that you go to bendybodiespodcast.com and let me know what kind of information you want your family and friends to have so that we can then create that episode for you.

So that's the first thing.

Then the second thing that I think I want to just mention is that for family and friends, one of the things that they have the most difficulty understanding is the variability from day to day.

So whether you have hypermobile EDS or HSD or MCAS or POTS, any of those conditions, it can be that you feel really great one day and then you are significantly impaired the next.

Or even just a few hours later, you can be significantly different than you were just a few hours sooner.

So a lot of family members can end up thinking that the person is exaggerating or they're not being consistent or they're not trying hard enough.

an incredible amount of time when you think of it like that.

To see the evolution of how we look at HEDS and HSD and hypermobility in general, I think that it's just credit to you for being a big part of that evolution as well.

Because you're right in saying we have more understanding now, but I think that there is still that gap in knowledge that Especially when it comes to, you know, how do we get hypermobile people strong? You know, we know that strength is a really important part as far as stabilizing joints, reducing risk of injury, reducing pain.

But where do we start? How do we do it? And that's often the question I find myself facing with people is they come in going, I've been told this.

Do, do you all think that, uh, these are separate diseases that, um, Dr. Fitzgerald, you kind of started to comment on this a little bit.

So do you think that, you know, hypermobile EDS, HSD, POTS, MCAS, ME/CFS, long COVID, you know, et cetera, are these, uh, separate diseases? Do you think that neuroinflammation is something that happens with, you know, most people with mast cell activation? How does this fit in with autonomic dysfunction and all of these other things? Do they have shared biologic pathways? What do you think is the story there?

Sorry, that's a lot of questions.

Um, I, I can say for, for one of them, um, MCAS, I think is, you know, neuro- neuroinflammation.

So everything we did had to take into account the biopsychosocial model, um, which was really, really interesting.

Um, so my, um, dissertation very much focused on what are the causes of, um, pain-related disability in the hypermobile EDS and HSD adolescent and adult population.

So, um, it was a, um, it wasn't, I didn't conduct a research study.

It was very much a literature, extended literature search.

I mean, it's a big, big project.

I know one thing they are looking at, which has always been a little bit, um, I don't wanna say controversial, maybe a bit misunderstood, is this hypermobile EDS and hypermobility spectrum disorder.

So we had these two classifications, and if people didn't meet the full diagnostic criteria for hEDS, they were diagnosed with HSD, hypermobile uh, hypermobility spectrum disorder.

And then this led to this discussion that, well, is HSD a lesser diagnosis than hEDS, you know, and it's just not the case.

But then also some studies have found that 57% of endopatients meet the criteria for hypermobile spectrum disorder as well.

So for HSD, which is pretty, pretty large number as well there.

And then pelvic pain is present in 80% hypermobile EDS patients and 66% for HSD.

So we've got that really quite a large, broad data range there as well.

But I think for me, the symptom wise, it was all the like heavy periods, the pain, the cramps that were more than most, like it wasn't a bit of discomfort.

and that's I guess the biggest gap in research isn't it is this you know and we know and it's been well publicized this year that you know, it's only recently we've been studying female bodies as part of standard research.

I know, crazy, right? Yeah, like even like female mice weren't being considered in mice models because hormones would interfere with the research, which is just bizarre to think, isn't it? That we have all of these conditions that primarily affect women.

You know, the conditions are talking about, you know, HEDS, HSD, that's 80% female, 20% male.

Some have experienced years of joint pain, repeated strains, headache, dizziness, fatigue, or injuries and wonder if it's all connected.

Today, we'll answer questions like what exactly is Ehlers-Danlos Syndrome? What's the difference between EDS and hypermobility spectrum disorder? Why do some flexible people have no pain while others struggle with persistent symptoms? And most importantly, what does the research tell us in how to manage these conditions and still stay active? Whether you've recently been diagnosed, think you might be hypermobile, or you're a healthcare provider trying to better understand these conditions, I hope you'll all come away with a better understanding and some practical tools to help.

Before we get started, a quick reminder that this podcast is for educational purposes only and should not be considered medical advice or a substitute for an evaluation by your healthcare provider.

Every person is different, and treatment should always be individualized.

We're trying to rule out things like Marfan syndrome, autoimmune, other autoimmune connective tissue disorders, and other conditions that might cause joint hypermobility.

Hypermobility does not automatically mean that you have EDS.

Many people are naturally hypermobile, and symptomatic hypermobility does not mean you have hypermobile EDS, and people who do not meet the criteria for hypermobile EDS have something called hypermobility spectrum disorder, or HSD.

So hypermobility spectrum disorder is just like it says.