EDS Diagnosis

Hi all, I recently went to the doctor for my sacroiliac joint/tailbone/hips popping 10-20 times per day along with severe sciatica pain. She referred me to an orthopedist, who is referring me to physical therapy.

The orthopedist said I have EDS, or Ehlers-Danlos Syndrome. She tested me for this by moving my elbows and knees and asking if I can touch my thumb to the same arm (I can). I have also had surgery to correct painful flat feet.

It seems that migraines are more common with EDS. Does anyone else here have this, or might have it, or know someone with it??

I've definitely heard of the link with EDS and headaches/migraines. I have some symptoms/qualities that tend towards EDS, but I don't think I'd meet the diagnosis criteria. My weirdest quality is that my head easily goes back to tough my back, but I don't have hyper-mobility of any joints or a lot of the main characteristics. Did she have any pointers, or will this diagnosis help with treatment of your migraines in some way? Sorry about your joints popping. Best wishes.

No unfortunately I don't think it will really help. From what I've looked up, it seems like only the symptoms of EDS are treated and there's nothing else to do about it. I can touch my back with my head too, is that abnormal? I didn't realize my elbows moved more than normal either, I suppose.

I guess EDS is some sort of collagen deficiency, or abnormality. I wonder if taking collagen supplements will help? I'll ask the physical therapist.

Yeah I hadn't realized that my head going all the way back was unusual, but a doctor told me that. I hadn't thought I was too flexible either, but apparently so? Good luck.