See Alike in...

Alike App

Browser

OrionK

609d

what symptoms will indicate that my condition is getting worse?

    • EDSandco

      608d

      That depends highly on your subtype and even then it won't be the same for everyone. The bellow paragraphs describe some of the changes I went through within a few months of turning 20. I will say that I've gotten better in someways since then but that year was a major turning point in my quality of life and overall health. For context feel free to skip the * *at 20 I found out that likely have vEDS with hypermobile cross over or hEDS with a ton of vascular crossover rather t han the hEDS I was diagnosed with when I was 1. I still havent had genetic testing but bases on ages and causes of/at death in both sidesof my family and my facial features my team all treat it as thoughi have vEDS.* The symptom changes that stick out in my mind were that: My POTS was debilitating, blood volume and flow issues got worse, my blood pressure was insanely low, my GI problems got worse and I developed new ones, I developed more neurological symptoms, became more hypermobile but less flexible if that makes sense, my healing time became easily 4 or more times slower than it already was, I bled & bruised easily, my skin and soft tissues tore more easily, I had prolapses, my unspecified autoimmune disease got worse, MCAS got worse, I had issues with organ function, etcetera. It felt like everything that could go wrong went wrong. Some other changes we noticed were things like treatment plans that helped for years no longer helped or didn'thelp as much. Improvements from physical therapy went from happening more slowly than normal (for someone without EDS) but happening to being so slow insurance didn't want to cover it because (they felt) it wasn't helping, I had to get meds changed in every category of care except for psychological although they worked with my cardiologist to adjust my Adderall so that technically changed too. Prior to turning 20 I could get by with a cane or rollator but ended up becoming bed bound prior to being prescribed a wheelchair when I was 21. I'm 25 now and have been able to transition from a power chair to a manual with power assistance wheels so that at least has improved. I could go on forever about that changes that happened to me but suffice to say I went from managing my EDS to it destroying my life for a few years. I'm doing better now but I still struggle a lot more than I did prior to it getting worse.

    • theythem

      609d

      Idk if there is a specific set, but I know that I have been having more sprains and dislocations

☝ 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.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion