Firstly as of 2017 there are now 13 different types of Ehlers Danlos Syndrome, many being extremely rare! However now the gene mutations have been recognised it is possible for a patient to be tested in all variants apart from Hyper mobile EDS.
Due to the complexity of the condition, no two patients have the same two symptoms, which is why it can take many years to get a diagnosis.
When seeing your GP, ask for a referral to a rheumatologist to discuss your concerns and always write down and problems you are having, how long you have been struggling for and also make sure you write any questions you may have, those initial meetings always are a bit intimidating.
If and when you get a diagnosis it’s a positive thing, it means you have known something has been wrong all this time.