May 7, 2016 at 10:34 pm #1008Morningview21Participant
Hi guys! New here. I know I can only truly be diagnosed by seeing a doctor, but I was wondering if EDS is something I should talk to the doctor about. I’m a 21 year old male. I’ve had various issues with my body for years, but I’m just now wondering if these aren’t individual incidents but rather part of something larger. On the flexibility scale, I don’t test high at all. My fingers and wrist aren’t flexible. My back is flexible but the opposite way. If I lay on my stomach,I can bend my self 90 or farther. (I believe the exercise is called a trunk lift?) In gym class in middle school, I also realized I have very flexible shoulders. We were asked to try and stretch our arms behind our back and touch fingers. Some kids couldn’t do it at all. Others just touched fingertips. I was able to grab each of my elbows. Not sure if any of you know the stretch I’m talking about… Anyway, I played soccer and baseball, an my knees were always aching and they’d pop out of place and right back in sometimes while running. My shoulders feel VERY weak and it feels like they’re just hanging from my body. They pop and crack often. So does my collarbone. I get spasms in my lower back from time to time and pain in my upper back that radiates into my chest. My neck hurts often an it feels like my head is too heavy for it to hold. This strain on my neck gives me headaches. I have flat feet. I’m nearsighted. When I got braces, I had to have an expander because of my narrow palate. My chest sticks out a bit. I occasionally have chest pains. I went to the ER for it once and they said I was throwing PVC’s. I’m 6’5 if that helps. I’m sorry for rambling about my pains, but I’m at a loss for why my body feels like it’s held together by rubber backs. Any help would be appreciated.May 13, 2016 at 11:08 am #5949Dr. DianaKeymaster
Boy, this is a tough question! If you are not flexible, you likely won’t be considered for a diagnosis of EDS (have you looked into the Beighton Scale or the Brighton Criteria?). I think it’s important to first be checked for potentially dangerous/treatable conditions such as Marfans and Loeys-Dietz syndrome. If you have the all-clear on those, the next step is to consider very rare conditions — something a geneticist could help you with IF you and your doctors feel it is worthwhile. Because most EDS patients cannot be diagnosed genetically, and because treatment is currently for symptoms, unless you need a firm diagnosis for insurance purposes, work, etc, the presumptive diagnosis may not be helpful. That was the case for my family, I’m afraid. Please let us know!:)May 18, 2016 at 9:58 pm #5951Morningview21Participant
Thank you for the reply. I have a doctors appointment scheduled, so I’ll go from there. The more I have thought about it, the more I believe I may have Lupus. My late mom and both my sister and aunt have Lupus. I’ve found that a lot of my symptoms lineup with the general Lupus symptoms. 🙁 I’ll let you know what I find out. Thanks again for the help.
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