@cindyvag
Hi Cindy, I hope I'm doing this correctly. My first time on this blog. I read about your situation and hope the little I say can help a little. First of all I must tell you that most of what I know about was told to me from my husband, sons and friends. I was in such back pain I took a pain med that I had never taken before. It was Dilodid (sp). I was allergic to it and had a very bad reaction. To make a long story short, I was in ICU for 6 weeks, then 2 weeks on a regular nursing floor. That was 13 months ago. I was on a ventilator on and off for for several weeks. When I was off of it I had a tracheotomy tube. I still have it. Luckily I am in the 20% that made it out of the hospital. Most don't. They stopped counting the times I was code blue, I think that is the right term for not breathing. It was at least 12 different times. I am always sore in my back and neck, all of my muscles feel useless and sore, I still have that and headaches, dizziness, I wobble when I walk. hopelessness, my short term memory is gone, I can not form sentences and have a really hard time thinking of the correct words to say in a conversation. At first I used a wheel chair, then a walker and now I use a cane. I am extremely exhausted all the time, I cannot walk to the bathroom from the kitchen without gasping for air. If I try to do "something, anything" I am down for the count for a few days. I certainly hope you can resolve this.I didn't know anything about this syndrome until yesterday. I happen to have gone in to see the doctor that took care of me in the ICU. He just happened to read something about it. I'm not sure any of this will help but it sure made me feel better for having found this site to know I'm not alone. I know there is more but I can't think of it.