Elhers Danlos

[shortandpaleandoldandugly]

This isn't a TAAT but was inspired by another I read earlier that got me thinking and Googling.

I have a strange bag of symptoms which match with much of what seemed to come out of the thread earlier and I'm wondering, from those with experience of hEDS whether it would be worth seeing a doctor.

My symptoms are:

Hyper mobile fingers (I've always been referred to as double jointed).
Hyperextension of arms and legs
Pain in my foot (I can't wear heels ever)
A numbing sensation at times in one particular toe
Dislocated knees at times
A twitching eye
Exhaustion in the daytime

I'd be really interested to hear opinions from those with knowledge of this as to whether I would gain anything from seeing a doctor and whether diagnosis would match these symptoms. Many thanks in advance.

I have pretty much those too, plus ME/CFS.
Have you looked at the Beighton Score online? It's about how many of your joints are hypermobile.
I haven't gone for a formal diagnosis because it takes months/years and lots of pushing to get a diagnosis via NHS and then there's no treatment pathway. I already have one of those diagnoses and I haven't the strength to chase another.
There's a genetic test for one type of EDS but the rest are diagnosed by symptoms and exclusion of lots of other things.

In my experience it's the luck of the draw. One of my sisters has been diagnosed and tested for a specific type. My other sister with many similar symptoms was told 'what's that' when she asked her GP. And they declined to investigate. They live in different counties. But, I live in the same area as the one without a diagnosis and know several people who have been diagnosed here. The support that they have received as a result of this has varied greatly.

Sounds like eds but it's hard to get a diagnosis because there's no definitive test for most people. Dsd has it potentially but drs keep an open mind as there's other conditions that overlap. I have several symptoms myself but again gp and hospital are reluctant to label and leave as something else could be the cause

Thanks all. I have double jointed fingers- I can bend my fingers on both hands right back. I also can bend my thumbs down to my wrist. It's always been something I can do- as a kid I used to impress my friends with my skills!!
If there's no treatment pathway then maybe it's not worth worrying about. I've survived thus far! It's just interesting as the joint pain and other symptoms are much more recent and I hadn't clocked that there might be a link.