Hi SaraC,
I have been tested for lupus so many times over the years that I could have qualified for a patient role on House M.D. (For those who never watched the show, they had a running joke that “it’s never lupus”.)
And, no, I don’t have lupus either. The rheumatologist who screened me for lupus the first time back in 1990 was the one who diagnosed me with Ehlers Danlos Syndrome, hypermobility type (8 out of 9 on the Beighton scale).
I understand your squeamishness about seeing a physical therapist. I finally took the plunge this past month after almost 40 years of symptoms, and I am so glad I did! I traveled over 1,200 miles to see Jerry Hesch in Aurora, Co. He is outstanding and well-versed in both hypomobility and hypermobility issues. Do a Google search on him and see if he may be of benefit to you (he has lots of educational youtube videos to watch even if you don’t go to see him).
I have absolutely less than no interest in ever seeing a “big box store” medical specialist ever again for my EDS, narcolepsy-like sleep disorder, or platelet disorder. What a waste of time and money it has been for me. Instead, I do my own research of the medical literature and correspond with researchers and people like Jerry who have a life-long passion for learning and helping people with chronic, complex health problems.
Living with EDS has been both an arduous journey and a curious adventure, and I am glad for the opportunity to have met and shared ideas with so many interesting people over the years. I can only hope for such an intriguing adventure for you in your quest for answers and relief from all the suffering.
MTD