Stories
Privacy
Download
See Alike in...
Alike App
Browser
606d
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
1
2
Share
Generalized pain
Chronic Generalized pain
Feeling of choking
Ehlers-Danlos Syndrome (EDS)
Dizziness
advertisement
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.
3
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
☝ 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
Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.
Instantly get answers to medical questions with our AI, built from the collective wisdom of our community facing similar experiences
Write your question here...
Download Alike for the full experience
Copy Link
Copied
Discover your Alikeness™ with people who are on the same journey, gain wisdom and get emotional relief in a secure & anonymous space.
4.7 Ratings
Scan code or click below download the app
Bupropion
night sweats
paranoid
Valium
sertraline
palpitations
Anxiety (Including GAD)
Depression
Alike health
Instantly get answers to medical questions with our AI, built from the collective wisdom of our community facing similar experiences
Related Questions