New, still trying to get my hms officially diagnosed

Most doctors aren't interested in hypermobility syndrome.  I have a diagnosis of EDS1&3 crossover. Before that my GP told me my flexibility proved that nothing was wrong with my joints!  I had to see an orthopedic consultant privately to get x-rays and an OA diagnosis as my GP refused to believe (or refer) me.  Then after a blood test showed positive for RA I was told again not to worry, I was obviously OK with flexible joints (must be imagining imagining the pain).  I went private again, to a rheumatologist and he diagnosed hypermobility syndrome and sent me for EDS testing at the genetics centre (on the NHS finally).  My hypermobility is extreme, always was, I had hundreds of dislocations as a child and young adult, mostly my knees but also jaw, hip, thumbs and shoulders.  My skin is fragile, tears when it has needed stitching, I have had digestive pain most days for most of my life.  The list goes on, along with a strong family history.  My GP is still disinterested and doesn't want to learn. 

So my advice to you is gather together around a hundred and fifty pounds, phone clinics to find a rheumatologist who has an interest in hypermobility (very important to see one who is up to date on hypermobility and its implications) and go see one privately.  Then you may get a diagnosis, or at least answers.

Hi I am Pam from British Sjogren's another auto immune disease! You need to look at the Beighton Scale and tell your rheumatologist if you were/are able to bend your body. I was 9/3 now. This has been an enormous and overlooked problem that many of us born in the 20th century. We have been overlooked by the medical profession! Whilst you may feel angry, it is not the fault of the medical professionals treating you the reason why they didn't know is they were taught being bendy was anything other than benign (nothing to worry about). It was the fault of 2 hospitals researching who didn't contact each other, they are both in London! Please don't do litigation as it's not the fault of your GP or Consultant, however now if you fit the Beighton criteria, and have aches and pains, feel anxious, tummy problems, you have Hypermobility Syndrome. I suggest you look on the Hypermobility syndrome website. If you fit the criteria for that, download any information you can. The Ehlers-Danlos Syndrome group has a wonderful book which you can join for a year for £15 and with your subscription they will send you this book and magazines. If you feel this fits you you must tell your GP at this moment only 10% of GPs know about Hypermobility! You also need to tell your dentist as it may have affected your teeth, also every consultant you see as from what I read you like me have really had problems. These are all Hypermobility related, however you may have other symptoms too. If you look at UK POTS you may find that you could have POTS too. Very few medical professionals will know about this so if any of this applies to you, please do spread the word, to educate every doctor you see, don't be afraid, if they are good doctors they WILL listen, I have now found if a doctor refuses to look at my notes from the Hypermobility syndrome Association I will say I don't wish to see him again. You do need to educate them if they refuse, repot them to the hospital concerned I am going to if this happens. I am so sorry for your troubles however if while you don't have RA you still may have a positive ANA. I do! I have been diagnosed with seronegative Sjogren's Syndrome which gives you dry eyes and mouth and Psoriasis with mild PsA, plus Hypermobility syndrome Fibromyalgia and POTS. I am awaiting a referral to a POTS specialist. If you wish to talk further please let me know x