When I was on the diagnosis path and was beginning to think I had EDS and POTS, I would look on the Internet for hours at a time to try and find what people were doing to manage both disorders.  So I have decided to document the process that I am going through to figure out what works for my own records and for anyone else out there who may also be looking for more information on the management of either disorder.

I have come up with a beginning schedule of ways to try and help manage my POTS and EDS until I can get more treatments going such as physical therapy, prolotherapy, chiro/massage, water therapy…Of course this schedule does not take into account day-to-day happenings such as appointments, errands, housework, etc…

After 11 long months, I have my first answer.  I went to Cleveland yesterday to get the results from my autonomic nervous system testing.  I went into the appointment with low expectations, most of all to protect myself.  I had been through so many other appointments to only find myself frustrated and disappointed when I was told that the test results did not show anything.  The doctors would tell me to celebrate the negative results but honestly this was hard when I still knew something was really wrong, and I didn’t know what it was.  I would leave many specialist’s office feeling like a crazy person when I was told my tests were normal, or that they came back “beautiful,” while I was still having crazy symptoms that made me sick.