stardust_1999

125d

hey guys. I have not been diagnosed with EDS. But I am heavily suspecting eds. I'm only partially stretchy. I know most of us aren't drs, but if someone could message me so I can talk about my symptoms and compare them a little bit, that would be great. I feel like I meet most of the criteria, but not the deciding factor ones if that makes any sense. maybe I'm just gaslighting myself, but I don't know. Thanks

Generalized pain

Chronic Generalized pain

Feeling of choking

Ehlers-Danlos Syndrome (EDS)

Dizziness

View all
  • Heaven197987

    125d

    I've I got EDS diagnoses 8 years ago I never got the type I feel like I can't get the proper diagnoses because to do that if have to get a genetic test and most insurance won't cover it

  • randochikn

    125d

    I saw a pediatric geneticist at Childrens Hospital back in January/February, she did the exam and said I didn’t meet the pain criteria for hypermobile EDS (I am 17, and I hadn’t realized or fully processed the pain part of EDS so I told them I didn’t have pain, but now I definitely do or at least notice it) so they diagnosed me with Hypermobility Spectrum Disorder. I was diagnosed with POTS a few months before quite easily so we knew that, but the geneticist didn’t even recommend genetic testing but we told her we wanted it, so we paid for it (pretty cheaply through Childrens luckily). Got the test back, and it told me I had two genetic variants of “unknown significance” for spondylodysplastic-causing EDS and vascular-causing EDS. They never explained it to me or my mom, and they didn’t even follow up with another appointment. At that point I knew I would have to figure it out myself at some point. My symptoms are vast and complex, some big and some small but the main ones : joint hypermobility(double jointed), joint pain (mine started in 7th grade ish when I had major wrist pain, then followed some back pain that only happened after exercise like with sports), POTS/dysautonomia (random issues include : dizziness with standing too long, breathlessness with standing too long, temperature not regulating aka too hot and too cold when others are average, exhaustion, orthostatic headaches with laying down and then standing, “air hunger” aka not feeling like I have enough air and taking in more than I need), and a million other smaller things related to mental health, dental, fatigue issues, burn out etc. Hope this helps some.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.