- CASE FILE
I’ve suffered from pain, GI, neurological, and other symptoms. It’s debilitating, but my story isn’t over, and I believe there is still hope
ABOUT THIS CASE FILE
I was diagnosed with Ehlers Danlos Syndrome when I was 20. For 20 years I was searching for a diagnosis and I never received much medical attention and/or help. Now being diagnosed I still don’t receive much medical assistance as in doctors aren’t sure what to do or what else is wrong with me. I have tons of unexplained symptoms that aren’t being investigated or treated. I’ve lived with pain all my life, it’s the biggest obstacle that I face being a almost 23 year old woman. It’s impacted me in ways I can’t live a normal life anymore, I can’t work a typical job, I’ve lost jobs, lost friends/family, I can’t go out, I can’t live a normal life anymore. I spend most of my time in bed as I’m in to much pain in most of my body, or I’m feeling weak, and tired. The pain feels like my body is just giving out and I can’t get up or move. It has a vice grip on my life. The other symptoms such as migraines, double vision, trouble swallowing, difficulties standing, urinating, speaking, hearing, seeing, excessive thirst/sweating, vomiting, constipation, diarrhea, abnormal periods, pelvic pain, insomnia, rapid heart beat, high/low blood pressure, low blood sugar, adrenaline rushes, skin irritations, fainting spells, trouble eating and drinking, nerve type pain, chest pain (feeling like I’m having a heart attack), and pain in more areas of my body that have yet to be explained or looked into. I’ve done lots of different tests, and treatments and the doctors here aren’t sure what to do. As far as my pain goes, no one has really done much to try to see what is the cause as it’s not normal, my pain is very specific, I’ve done years of physical therapy, I’ve tried injections in different areas of my body, but still no help or explanation of my pain or further investigation by other specialists. My migraines are very debilitating, I’ve been on several migraine medications and they haven’t helped much. I have a sensation of something is inside the base of my skull and I feel lots of pressure and that’s when I have the double vision, trouble swallowing, difficulties seeing and speaking. My GI symptoms come on sporadically, no known triggers or causes. I was on a medication for delayed gastric emptying, which failed as well. I just want explanations and validation as a patient, I want someone to take on my case and at least if they don’t know anything about my condition(s) or symptoms, they will at least try to find a cause or treatment for what I’m suffering with. I have much more life to live, but not with all these symptoms that I have. I’m currently not on any medications to help combat these symptoms/conditions. I believe I still have hope and that there is someone out there that can help me and take a further look at what I’m suffering with and give me solutions; if not a cure.