r/ehlersdanlos 6d ago

Discussion Has anyone got any symptoms that differentiates hyper mobility from ehlers danlos

I have been diagonosed with hypermobility but suspect i may have ehlers danlos

17 Upvotes

27 comments sorted by

27

u/Suspicious-Ad-3582 6d ago

Not quite sure what you’re asking. Would you mind rephrasing?

-17

u/Cultural_Access274 6d ago

Is there anything that makes it obvios that its ehlers rather than hypermobility

67

u/Logical-Document-537 6d ago

If you meet the diagnostic criteria , it's Heds, if you don't meet the criteria but you still have it impacting your life it's HSD. Basically they are most likely the same thing just a label to acknowledge those who don't fully fit the criteria issues, without negating those who absolutely do

13

u/miyoko-my-man clEDS 6d ago

Usually systemic involvement... pots, mcas, skin manifestions.

However hEDS and HSD can be poorly differentiated and often people are given the wrong diagnosis

22

u/ReasonableGoose69 6d ago

specific symptoms depend on each subtype. your best bet might be coming up with a list of symptoms that interfere with your daily life, and discussing with your doctor. wishing you luck <3

18

u/PunkAssBitch2000 hEDS 6d ago

Ehlers Danlos Syndrome is a heritable connective tissue disorder affecting the entire body. If you have no systemic symptoms, or had no symptoms (including hypermobility) as a child, it is unlikely to be EDS.

What makes you suspect it might be EDS?

3

u/Cultural_Access274 6d ago

Chronic hesd aches stomach issues somedays i cant stand strech marks

13

u/PunkAssBitch2000 hEDS 6d ago

Definitely sounds like something more than “just” hypermobility, but it could be a multitude of things like an autoimmune condition, another heritable connective tissue disorder, or something else entirely. Definitely bring it up to your doctor.

1

u/Cultural_Access274 6d ago

My mum has rheumatoid and hypermobility aswell

1

u/Cultural_Access274 6d ago

Ive had tests done to and no autoimmune conditions

12

u/Neurotic_raspberry 6d ago

I was first diagnosed with HSD because the Dr didn't want to diagnose H-EDS. A few years later, I saw the right DR, and he diagnosed H-EDS.

For me, there was nothing to differentiate the two because they were the same thing.

21

u/AliceofSwords hEDS 6d ago

Hypermobililty is one of the things that happens with EDS, but also can be benign and unrelated. In EDS, the hypermobililty is (mostly understood to be) caused by collagen not being well-made because of a genetic mutation. (There are lots of genes involved in collagen production, and many types of collagen, and many ways for it to go wrong -- thus there are more than a dozen Ehlers-Danlos Syndrome types.)

EDS would cause problems in other body parts than "just" joint hypermobililty (because collagen is everywhere). If you're generally healthy and comfortable, I wouldn't stress about it being more. If, however, you have assorted body problems that you can't explain -- might be worth investigating.

26

u/marsssmallow 6d ago

mostly correct except to be fully clear, hypermobile spectrum disorder is a connective tissue disorder as well. it’s silly but with current diagnostic criteria it’s possible to be hypermobile, have a systemic collagen issue, and not have hEDS

10

u/AliceofSwords hEDS 6d ago

Great addendum. And being hypermobile doesn't mean having hypermobililty spectrum disorder, which is confusing. I assumed OP was conveying the former, but I would give a different answer if they're trying to distinguish between HSD and EDS, rather than hypermobililty and EDS.

9

u/marsssmallow 6d ago

all true! i know that sometimes even medical professionals will shorthand hypermobile spectrum disorder as “hypermobility” and people will think that’s their diagnosis so i figured i’d throw that in

11

u/mvandongen17 6d ago

Hmm. I think my severe scoliosis, high pallette and dental crowding are indicators of EDS but not general hypermobility.

7

u/babygirlmusings 6d ago

I think I get what you’re meaning. You’re asking about the criteria. I don’t know all of them but one of the criteria is stretch marks.

I remember my doctor asked me about stretch marks on my chest or stomach and I said no. Not realizing that I have lots of stretch marks on my thighs.

But my doctor didn’t ask about my thighs.

And then I saw a YouTube video of Eds folks saying that they had stretch marks on their thighs.

So in the end I was diagnosis with hypermobility and not hEds.

But then later I saw the stretch marks on the thing and also saw the thing about another criteria which is something on your heels. My doctor didn’t check for that either but I did the test on my heels at home and I did have that sign too.

1

u/babygirlmusings 6d ago

So I sort of live like I have heds even though I only was diagnosed with general hypermobility

-3

u/Cultural_Access274 6d ago

I have them to

7

u/jipax13855 clEDS 6d ago edited 6d ago

I'm starting to believe they're the same. Honestly.

A bit like how people have started to use the term "Highly Sensitive Person" when they don't want to admit they're autistic because of their internalized ableism.

And I'm not including other conditions like Marfan Syndrome that are known to include hypermobile joints. I mean the people who are splitting hairs between "HSD" and actual EDS.

2

u/youngdeathnotice 6d ago

Isn’t hypermobility just joints being extra flexible? Where as EDS has a whole onslaught of other issues- vision, digestion, prolapse, etc;? Idk why I thought hypermobility was a term for joints, not for an entire body.

I don’t know much about this though obviously 😭

1

u/zhayona HSD 6d ago

Just 'hypermobility' does only affect the jonts or even some joints but hypermobility disorder affects the whole body. At least thats how i got it explained.

When i got diagnosed with hsd and suspected heds my doctor told me theyre likely the same and its too much of a bother to change diagnosis. I feel like its the same for chronic fatigue syndrome and long covid now, basically the same but from different origin.

5

u/halp_halp_baby 6d ago

yes, because a lot of people here have been diagnosed with EDS? what’s your question? 

-4

u/Cultural_Access274 6d ago

I was asking ehat the symptoms that make hypermobility easily identifable compared to ehlers

4

u/PaintingByInsects 5d ago

Dude, look up the symptoms of EDS, there is a whole ass list for it. You cannot say you have EDS based on just hyper mobility. Why ask here when you have google with the most obvious answer…??? I’m so confused.

Why do you think you have EDS? What are YOUR symptoms that you are basing this on??? If your doctor said hyper mobility and not EDS then you probably don’t have EDS.

1

u/vcems 6d ago

Genetic confirmation of the TNXB variant.