Hi. I’m new to the group. I’m not sure if I really belong here, but I’m sick and tired of feeling sick and tired. If you saw photos of me from 2019 to now you wouldn’t even think they’re of the same person. I’m almost 42, I live in the states, and I’m not “formally” diagnosed with EDS. I am diagnosed autistic, mixed IBS since elementary school, and was diagnosed with fibromyalgia in 2017. I also have issues with either very low or high blood pressure, tachycardia, and intolerance to heat or extreme cold. So, I don’t know that fibromyalgia fits. I used to dance when I was young, but I quit due to pain. I also have a history of instability with ankle sprains, one ankle fracture, and a finger dislocation that I pulled back into place on my own. I literally injure myself just from walking. And I can’t remember not being in pain and I’m embarrassed to admit that in a weaker moment I actually reached out to Dignitas for more info, but for when my kids are grown if I can’t take the pain anymore. Autism, GI, autoimmune, hyper mobility, and AS run in my family and the younger generations are sorting it all out. It’s embarrassing that I’m disabled whether I’m willing to admit my limitations or not. I have worked in tech and marketing my entire life starting with the gaming industry, so I’m more sedentary than is healthy. I’m actually leaving a high stress remote job 5/1 because I can’t tolerate the amount of Zoom meetings with social interaction and sitting in front of a screen for that many hours a day despite a Herman Miller chair. I built all my husband’s Shopify stores. He asked me to join his LLC and work with him on a schedule that will allow more movement and hopefully aqua classes at the YMCA. I’m also planning to use my side hustle as a published author and make it more viable because I don’t think I can work for someone else in my condition. I found the Zebra Club by accident while searching for answers for my daughter. She is 14, on a waiting list for autism testing, attends a gifted school, has IBS, and sees a urologist specialist because we’re still doing Depends at night due to incontinence. She saw a Peds Rhematologist last week who told her that she was hypermobile, has lax joints, and called her a loosely goosey girl. No testing was ordered. They suggested PT, OT, and desensitization therapy for her. The sheet they gave my daughter recommended 45 min of cardio a day and some exercises I know would really hurt her, especially since she was just in the ER because she fell at school and bruised her tailbone so she was released with a walking cane for support. I have tried PT in the past with limited results because it usually hurts more. The Peds Rhematologist also mentioned Amplified Pain Syndrome and called it Pediatric Fibromyalgia. So I Googled hypermobility and fibromyalgia and landed on the EDS society website on a page with a video about the hypermobile back. I watched it because I’m finishing day 5 of steroids to deal with immobilizing low back pain and SI joint pain. This is how I found this app and I hope it helps because I’m out of options, energy, and spoons.

Posted by Jules at 2023-03-26 15:38:10 UTC