Other The Joint Hypermobility and Ehlers-Danlos rabbit hole; Experience and information please.

[Anarchy]

OK, I only discovered that I have Hypermobile joints, after forum members here were discussing it.

The Beighton score Is the most popular assessment to identify whether we're bendy enough to be on the joint hypermobility spectrum
Beighton score

Once you know what you are looking for, it's actually possible to get a fairly good guess of who has joint hypermobility, just from their facial features.

The Rabbit hole part begins with an increased frequency of anxiety disorders in people with joint hypermobility, compared to a control population, about three times more!
Psychiatric and Psychological Aspects in the Ehlers-Danlos Syndromes (for Non-experts) | The Ehlers Danlos Society

I really don't know how the feck that works, because the people who use know who have hypermobility, have life histories of extreme trauma - their ptsd certainly does not have a cause in their DNA!

Anyway, the Rabbit hole goes deeper

Within people who have Hypermobile joints, there are sub populations who have the various types of Ehlers-Danlos syndrome with identifiable mutations in their genes coding for collagen in their connective tissues

The only form of Ehlers-Danlos that doesn't yet have a genetic test available for it is the Hypermobile variety.

The very alarming part is the vascular variety of Ehlers-Danlos - where anuerisms and burst arteries lead to very reduced life expectancy :o

And problems like fatigue, headache and dizziness in normal life due to the stretchy blood vessels giving reduced blood pressure.

I've got the hypermobility, I've had the joint dislocations, subluxions sprains and I've got the little bulging hernias on both of my feet, I've frightened nurses with low blood pressure, I'm now getting too many stupid injuries, pains and crap like sore gums. However much I distrust quacks, I'm thinking it's time to get tested to see if I need to take extra care.

Here's something silly. Out of the serious relationships I've had, around half were people who had serious joint hypermobility, and I think that at least two people, plus another one's mother probably had Ehlers-Danlos (inexplicable joint pain, covered in stretch marks, extremities going strange colours in the cold)

The frequency of Ehlers-Danlos in the general population is about 1 in 25,000! Perhaps it comes with something like gaydar?

 

[Sideways]

The frequency of Ehlers-Danlos in the general population is about 1 in 25,000!

This surprised me. People with EDS have popped up all around me since I've been working with people with Assistance Dogs, and there's several (that I know of - and it's not like I have everyone's personal medical history!) that attend my trauma program.

Definitely think that getting a specialist involved would be helpful. Not just to manage risky symptoms, but so that you have informed choice about the options available to you.

Continuing to not do anything about it? Is always an option available to you. But definitely some people get treatment, and one person I know records medical data at home, which emails automatically to her specialist, and he can monitor and tweak her treatment without her even going in unless it's absolutely necessary.

 

[Tinyflame]

Far as I know @Anarchy , there is no treatment, other than painkillers, and a list of things to 'avoid' (heavy lifting; stress; running; straining; elective surgery; even chilbirth- which you're ok with :laugh::hug: ). I am quite sure you can be hypermobile without having EDS, as far as I know it also includes any of: eg cigarette paper scarring, creping of skin (not heard of stretch marks), as you said frequent and easy dislocations and early onset arthritis; the severe fatigue/ pain; the facial features (some have, some don't), translucent skin, constipation +/or IBS, secondary Reynaud's, spontaneous bleeding, hernias, clotting problems that come and go, colloidal bodies, etc.

So that's what's on my feet? Lol. Years ago a dr told me ganglion;s when I repeated it to him, he said "They're not ganglions, where'd you get that??!" ('You-?' :rolleyes: )

Did not know about anxiety though. I always had anxiety, even an ulcer as a kid. Happy, but anxious. Anxious, but not about to talk about it. Pain alone decreases resources and increases anxiety, IMHO.

 

[jaccat]

My ‘diagnosis’ was a throwawy comment from a doctor at the end of an appointment about something else. It wasn’t until I went back years later and told them the issues I was having that I got given the Beighton test and then referred to a physiotherapist. Based upon his reaction, I don't think the doctor saw many people like me.

Trouble is, standard joint hypermobility is really common, especially amongst children. Most kids grow out of it, and most people experience no problems (so don’t qualify as having the syndrome), so generally I think people don’t see it as something worth investigating. I think if you want it investigating you’re probably going to have to push for it.

As for the anxiety, etc., I’ve given up working out which of my various conditions are behind what symptom. It seems nearly everything I’ve been diagnosed with comes with anxiety and insomnia etc., as an added side-effect.

 

[BrightSmile]

I have hypermobility disorder I always thought I was just double jointed until last year when I was in a car accident and rearended my lowback was hurt unusually worse than it should have been. I was referred to a Physical Therapist and must have been just the right one! She was amazing! Everything finally made since why I always had tension headaches since childhood, growing pains as a kid, I grew fast then suddenly stopped at 10 I'm only 5' tall, I could bend in other ways others couldn't why my joints pop and creek, why it takes me longer to heal from strains and sprains than most ect. The most important thing for me has been to keep moving I feel best when I am walking or exercising safely and my PT advised me to stay active otherwise I may need joints replaced later in life. As far as anxiety I don't know if that is part of it for me. I have been through a divorce which can cause anyone to have anxiety. I did recently find out my Dad's sister has it. She is in her 80's and is all crippled so I will be taking care of my body I will not end up like that. It is nice to hear others out there like me that have it there are days where my headaches are bad and now throw in my lower back hurt but like everything I manage with Diet, exercise and anti-inflammatory. I do know it can be debilitating I'm sorry for those who have the disorder full blown as it can I'm sure be painful!

 

[Strangelongtrip]

My doctors think I may have EDS as well! Laughing so hard at your gaydar joke--my gaydar and my EDSdar are both incredible haha!