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Started by Julie A Hoffman... on 10/21/2016 9:00pm

I just registered to this board. Reading others at least makes me feel not so alone . I have has 6 spine surgeries myself and another few discs herniated above the titanium. They wanted me tower. Off my dialudid and oxy 30, they offered help but i am feel like I have to prove something. It was a shitty week . I was on mess for 9 years so there was definitely physical withdrawal and my mind did turn to needing my meds. He also ordered aquatic therapy and I already see a pain psychologist and psychiatrist for PA ic attacks. I've done it all and the pain in my back and legs is terr.ible. So I understand how u feel. I was wondering if anyone else has been diagnosed with a disease causing thsee things? I have Ehlers Danlos Syndrome Hypermobility and Vascular. I e of those invisibal diseases that no one knows what it is or how it affects me. Eds is a connective tissue disease. .we are born with mutated collagen. It attacks people in different ways but in the late twenties many have really progressed. It was kinda cool as a kid cause I could bend and amaze people with my Co nturtions. I still am more comfortable sometimes that shock people. Yet as we age we are prone to dislocations. I have generally a dozen joints dislocate every day. There's other stuff UT I just wanted to share a little for those unfamiliar. When they say what hurts it's like ummm most my joints etc. My current surgeon and I go round and round a out it. He says it doesn't hurt and makes it sound like nothing. He refuses to give me any pain control. He also said straight out if any pain click I try to go to he will tell them not to give me meds. I have been to 5 drs.that can diagnose it but I can't find anyone to treat me as a whole. It has psychologically and socially affected me as well. A patient of children's hospital because they specialize in eds. I am 47...so they recommend things to my other Dr's but otherwise im more like a research tool. My average life span is 48. Cause of the stretching often we have like an aortic disectio n. I feel like in reaching out for help all over and just get shut down. I hate wasting what time I have left in bed. Sorry I rambled..my main question was if anyone has anincurable disease causing all ur problems yet Dr's don't take it seriously. I've applied to mayo and saint Judea because they both have experts that just do eds but it's a long way from Wisconsin .

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