Hello, another Ehlers Danlos sufferer here :hugs: although mine is the Hypermobility Type.
I completely understand the frustration of having a wealth of symptoms and not knowing the cause, plus the scaryness of facing an illness such as Ehlers Danlos.
I thought it might help you a little if you heard from someone else who had gone through the process of getting diagnosed:
When I was little I was terribly clumsy, had no balance, kept spraining my ankles, that sort of thing. =
As the years went on I continued to have trips and falls, as well as hip bursitis and a mysterious partially-torn Achilles tendon that happened without any acute injury or accident of any kind.
Every injury or symptom I'd ever had were always treated separately, in isolation, no GP ever looked at my history as a whole and put two-and-two together.
Long story short, just over two years ago I finally got an appointment with a Rheumatologist, and I took along a list of every disparate symptom I'd had over the years (including, but by no means limited to, the few I've mentioned above). It was a long list.:unsure: She looked over my list, did some tests to see how 'bendy' I was, examined me and diagnosed Hypermobility Syndrome / Ehlers Danlos Hypermobility Type and also a slight Scoliosis of my spine.
And all that I'd ever suffered from - the bursitis, the achilles tendonitis, the sprains and trips and falls, all suddenly came together - they weren't random, isolated things at all, they were all signs of Ehlers Danlos. And, even though I have the hypermobility type, I also have some symptoms, for want of a better word, of other types (my understanding is there can be a crossover of types).
You mentioned visible veins - yeah, I have those. In my hands (which look like old women's hands even though I'm not - another EDS sign!) and in my chest and arms, but mainly in my feet (or as I like to call them, my Salamander Feet). Yes they are that bad. No you don't want to see a picture of them. Trust me.:shades:
I know I'm rambling and I'm sorry, but I'm trying to get across the fact that, like me, I think you have a lot of different symptoms that need to be looked at as a whole.
Ehlers Danlos can come in many varieties and even two people with the same Type can have different symptoms as the condition is so wide-ranging. There can even be cross-over between the Types (for instance, I have slightly stretchy skin, poor wound healing, distinctive scars, visible veins that are more vascular than hypermobile).
I think you would benefit from writing down a list of all your symptoms / problems you've had over the years, even if they don't look like they are connected, and get a referral from your GP to see a Rheumatologist. That is the best department to get a diagnosis from (if indeed Ehlers Danlos is what you have). I think off the top of my head that the Vascular Type is one that can be genetically tested by a Rheumatologist too.
And - I know it's much easier said than done - try not to worry in the meantime - focus on getting a correct diagnosis and only then can you move forward and get as much help as you can for the various problems and symptoms that EDS comes with, if that is what you have. And if it isn't, hopefully someone like a Rheumatologist can either diagnose what is wrong, or point you to the correct specialist instead.
And
Do Not Google Your Symptoms. That never ends well, I know from experience!
If you want any more info about Ehlers Danlos then this is an excellent site
http://hypermobility.org/help-advice/ and I would recommend you have a read.
Best of luck to you, I hope you get yourself sorted out. Apologies if my post was unduly long.
