curlyspoonie:

Calling all fellow Zebras…

Yesterday I was diagnosed with EDS type 3, and during that appointment my doctor said that it is likely I will develop further complications within 10 years. Currently I have chronic pain (joint and nerve), sublux/dislocations, migraines, sleep apnea, heat intolerance, intermitant gastric upset, and soft delicate skin, but no POTS or Gastroparesis, ect. Try as I may, I have found nothing on the progression of this condition, and I was hoping the vast spoonie community might have some insights.

This condition has already taken my independence, my college degree, and my active, pain free life from me, and I want to have a heads up if I’m going to lose more. The hope is obviously that I will not get worse, and that meds will help my pain so I can ditch my cane and get back to a semi normal life, but I’m a little too cynical for that right now.

Bringing this back, since I’ve been diagnosed with POTS, am looking for a GI because of worsening digestive problems and weight issues, and am getting a cervical and thoracic MRI tomorrow to look for structural issues that may be causing worsening migraines, skull pressure, and drooping during migraines. My tremors are also worse, and I may have periarticular osteoporosis (whatever the fuck that is, can someone enlighten me? My shit ass rheumatologist lied to me, told me I was fine, and then a year later I found out that she had lied and discharged me)