Well this is my first post so if I am going on I apologise!
I have been diagnosed with hypermobility when I was 48! I thought it was normal for me that I could all these party tricks that it came as a bit of a surprise. Since then I have been looking into the associated conditions and came across EDS and slowly realised that conditions that I have had throughout my life could be due to a form of EDS/hypermobility syndrome/connective tissue disorder. I have suffered from problems during pregnancy and trauma during labour (they couldn't sew me up inside or out...blood transfusions) ( connective tissue disorder? ) I have had unexplained chest pain for nearly 10 years which, after many trips in an ambulance to A+E to be told it was muscular, eventually resulted in an emergency admission to hospital for more tests and again told it was muscular. I was then referred to a Cardiologist and he said it was Pericarditis but couldn't be sure. (floppy valve?) I have had Gastro intestinal problems with reflux and oesophageal spasms with tubes down my throat to find out what's going on (floppy valve?)
In addition to all that I have on going musculoskeletal problems eg lower back problems, osteoarthritis in my neck, foot surgery to fix my bones that were splaying out plus all over body aches and pains
Everything has been looked at in isolation and no one is looking at it as a condition with all these factors
My GP has referred me to a rheumatologist but they aren't knowledgeable about EDS but are about the hypermobility side of things. Is this rheumatologist worth seeing about hypermobility when what I need is a diagnosis/investigation for EDS?
The other problem is that my GP won't refer to a geneticist until I have seen the rheumatologist and because of the Covid situation my appointment has been postponed to July! Even the private specialists are not seeing patients till July/September!
So as you can probably see I am going round in circles and getting nowhere fast
I see that a few say 'is it all in my head'? which is exactly how I feel. Am I onto something here?! Some honest feedback would be appreciated.
Does anyone know how to or have any advice on how to get the initial diagnosis?
And thank you for listening!