@smbryce1, As for the symptoms, I will list them below:
EDS Criteria Symptoms:
Beighton 7/9
-Hands can touch floor
-Bend thumb to forearm
-Splits, Contortions
-Shoulder/Knee dislocated
-Velvety Skin
-Stretch Marks (Terrible) before child
-Bilateral Piezogenic Papules
-Musculoskeletal Pain 2+ limbs daily >3 months
-Chronic widespread pain >3 months
-Joint instability/absence of trauma
-(+) DNA test for vEDS from one report.
-My mother's pregnancy with me was high risk. She didn't know she was pregnant until 5 months and had me Emergency Delivery 6 1/2 weeks early at Arnold Palmer. I had birth defects.
-My pregnancy with my son was high-risk, I bled the entire pregnancy, on bed rest, and started dilating at 7 months, water never broke but the placenta tore up top and I was bleeding from it for several hours into labor until they finally broke my water for me. I did not feel the 3 epidurals they gave me. Pharmacological Genetic tests show little to no effect from pain medicines.
I am being evaluated for POTS in Jan as well.
Other Symptoms:
-Chronic crepitus/arthritis-like pain - hands, wrists, elbows, C-T-L-Spine, Hips, Knees, Ankles, Toes >21 years
-Degenerative Disc Disease dx at 15
-Heavy/weak/wobby legs (think magnetic/jello) >15 years on and off
-Chronic Migraines >3 weeks of the month >17 years
-More pain and symptoms around time of menstrual (also wacky clotting bleeding cycles for > 7 years)
-High pulse, Variation between 60-100ms daily, High BP (unpredictable), difficulty regulating body temp >15 years
-Chronic Kidney infections and stones >15 years
-Chronic constipation >22 years
-Muscles ache/feel like burning, inflamed inside out >7 years
-Bowel Swelling/immotility >22 years
-Difficulty passing urine/bm sometimes due to pain/swelling internally >15 years
-Night Sweats > 7 years
-Recurrent infections > 7 years (I.e. Lyme disease, Parvo B19, Strep back to back 4 times in a row, chronic "equivocal" BV, Cervical dysplasia 2x 2004 and 2014)
-Daily stomach pain and nausea upon waking >9 years
-Brain fog
-Occasional Neurological Symptoms - Numbness in extremities, Numbness in half of the face/teeth, Numbness in the neck, auras with and without migraines, chronic tinnitus.
I am not sure if I am forgetting anything but this should be pretty good. I need to print this out for my doctors lol
Wow, I was diagnosed with EDS as well, but you hit the nail on the head with all of my symptoms too! The auras, crazy menstrual cycles, chronic constipation, ALWAYS GOT STREP!!!! Brain fog most definitely. Tremors, night sweats, random instances of hives. Lots and lots of diziness.