r/hEDS_over40

I am a female(57) with Heds and I have lost three inches in three years and lower back pain that continues to worsen.
My pcp said this is normal. The Toronto eds clinic specialist said my back exray does not show fractures etc to explain and “I must have bent my knees when height was being measured.” Lmao.
I was 5’8” and am now 5’5” no bending of knees (I wish).
When I look up information on this I can’t figure out what kind of specialist to ask for? A rheumatologist or a spine/back specialist?
I also have shifting of the lower back and pcp told me that was not possible.
Anyone have something similar or have any ideas for what to do

Hi I am diagnosed with hEDS, MCAS, cauda equina syndrome and fibro. I’ve had essential tremor for years as well as severe restless legs. I also get an internal vibration? That other people can feel. It gets worse when I’m exhausted or have done too much or have hurt myself or have an allergic reaction. Suddenly my neurologist wants to say it’s FND when looking it up it could come from any one of the above conditions especially as I have CCI and severe nerve damage from the cauda equina. He has listened to my worries about getting this Karen but also says I won’t get the treatment I need for it without the label. Any thoughts?