Good to have found this and I identify with lots that have been written about.
I got a diagnosis of Fibromyalgia a few years ago and hypermobility, Brighton score 6/9 so not as bad as some though in my opinion he didn't check other places that I think there may be some hypermobility issues. He also didn't spot the blue tinges in my left and right eye which I now know from my own research and agreement from a GP can be indicative of hEDS. He also didn't use the diagnosis of JHS he just said hypermobility and gave me a leaflet when clearly from my own research I met the criteria at the time for JH syndrome. Again based on my experience downplaying things...and with the attitude your fine now off you go and self manage all by yourself. Which is incredibly disheartening and frustrating. Ive lots of other health issues and in my mind correct diagnosis is important as they can often have links to other stuff and i need that stuff on record especially with my other health conditions that when all combined leave me unable to work for a little while now.
I have a couple of questions that I'd be most grateful for any help with - can the doctor diagnosis heads or do I have to go back on the very long waiting list (I've been discharged ages ago) just to get that diagnosis. I also feel that in the rheumatologist eyes I am not bad enough - I don't dislocate etc but I have a lot of muscle and joint pain in the areas of my hypermobility and my strength lessens and lessens. In my opinion my hypermobility affects me a lot more than they either know, can see or believe. I have so much skeptism with the medical profession and these days you very much have to be your own doctor it feels.
Does anyone suffer with their eyes - I've been having a lot of aches with them recently and had inflammation from dry eyes. Could that be connected?
I often hear lots of grinding in my joints - is that part of it it?
My dentist is always saying be doesn't understand why my gums receeding so much - could that be related?
Thanks a lot and good to have found you all 💜