Hello,
I suggest you get a lawyer to help you with your case. Although you haven't worked, the lawyer can help you get your SSI early. I am 55, and in the same situation.
I went through the same thing. In fact, I knew I had EDS-HT from research I did myself. When I asked my doctor about it, He had never heard of Hypermobility Syndrome. He gace me a referral to a rheumatologist, who blew me off with no physical exam. I went to a different rheumy, who did the EXACT same thing. A year or so later, my little girl (20) was referred to a rheumy in another city, who immediately DXed her with EDS-HT. I was floored. I made an appointment with him, and sure enough, I DO have it, and I gave it to her. It's been 3 years now, and I'm still struggling to fimd a doctor who has actual knowledge of this disease or who is willing to at least TRY to learn.