How Many People Are Hypermobile?

[Alison]

I was told I was hypermobile this week, which I hadn't realised. I'm curious as to what proportion of people with Pots are hypermobile? and whether there are differences in Pots for people who are or who are not hypermobile? From what I've read about hypermobility since being told the whole thing now makes sense to me . I read that to counteract the slack blood vessels your body makes adrenaline, so hypermobile people can lead very busy lives without feeling tired - this is me. I'm finding it really hard to change as well, though I can now see how destructive is given the symptoms of brain fog I have.

[IceLizard]

Hi Alison,

I have it, as well as at least 12 other people here; there was a poll recently, though only 95 people took it.

http://forums.dinet.org/index.php?/topic/24847-what-caused-your-potsautonomic-issues-poll/

Conversely, this small study found that 78% of people with Joint Hypermobility Syndrome also have dysautonomia.

http://www.sciencedirect.com/science/article/pii/S0002934303002353

There is also a forum for Ehlers Danlos/ Joint Hypermobility at Inspire if you are interested.

I was also wondering about the differences in POTS or dysautonomia associated with JHS versus other causes. This short and interesting article mentions a few.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2847865/

Best,

Hollin

[Katybug]

I am dx'ed with EDS Hypermobile type. Www.ednf.org has lots of good information for you.

[Lethargic Smiles]

I was the same way! I thought I needed to be able to stick my feet behind my head while sitting up to be considered hypermobile. All sorts of positions I'd sat in my whole life turned out to be "not normal".

I also had no clue it wasn't normal for my joints to sublux. I didn't know the fancy term for it prior to going to the geneticist, I'd just say, "AGGH! My elbow slid out!" Until about a year ago, it never really hurt, it just felt unusual. The funny thing is, when I was younger, I'd ask my Mom if it was normal my elbows slid sometimes. She has EDS too (but didn't know it back then) and can dislocate her shoulder just by looking at it wrong, so a little joint sliding in and out of place isn't alarming to her. She'd tell me yes, joint sliding is normal, hers do that too -- it is something that just happens but to let her know if it ever caused pain.

[Alison]

I meant to put 'hypermobile' in the title, by the way.. My joints aren't particularly loose, I've never dislocated anything, nor can i I can't bend my fingers back. Two of my daughters have very long fingers, I think they might be hypermobile, and I was wondering if the long fingers is an indication of something. Is my dry cough and the fact that I choke quite regularly related?

[corina]

Alison, I fixed the topic title for you

[Katybug]

Alison,

I don't know about the dry cough but frequent choking is a symptom of chiari malformations which is prevalent in the EDS community since a lot of our parts (including our brains) sag and don't hold in place properly. But there are other things that cause this too. There's just no way to tell without being properly evaluated by a doctor that is trained in diagnosing chiari and/or is familiar with EDS. The gold standard for diagnosing chiari is an upright mri....not a regular supine mri. Even then, it's important to have a radiologist and neurosurgeon well trained regarding chiari malformations to review the images of the upright mri.

[Rima1]

Yes, I'm hypermobile too... however I have disabling fatigue with it. Thankfully though, it causes me little pain.