Thanks Barbara,
I do take vitamin D3 for that very reason. How much do you take? I also crave salt and so does my mom. We also rely heavily on caffeine. My mom drinks coffee all day long. I tell my husband all the time that I don’t feel well and I need salt. I love pickles and just about any thing with salt. It is funny how our bodies compensate with cravings to get what it needs. I have had orthostatic intolerance ever since I was a teenager. I mentioned it to one doctor when I was a kid and he blew me off. So I have just dealt with it and never mentioned it to any current doctor. It is sad how many things I have just ” dealt with”. About a month ago is when I sat down and listed out all my symptoms and those of my mom and kids. That is when I realized, FINALLY, that I have EDS. I have been clinical diagnosed, but I am waiting on a geneticist to tell me my type. I assume type III, but I have skin and vascular involvement too. I even had a brain bleed in 2007. I can’t tell you how many times I wished I had just died with it. I even delayed going to the ED, because I did not have anyone to watch my child, so I guess it is amazing that I did not die. I was left debilitated for 9 months and with a headache I never thought would go away. I can’t believe how many doctors will say “I know something is wrong”, but they did not want to take the time to figure it out. This year I have had bilateral total knee replacements and abdominal surgery. They were not successful for helping my pain. Now that I know that I have EDS it explains so much. I am very new to this and I am overwhelmed. I am not entirely sure of what I need to do next. I have been pretty ill for a long time, and I have just dealt with it. Unfortunately it is beyond the just live with it stage. My mobility and pain issues are debilitating. I kept thinking I would be able to go back to work, but I realize at this point I am unable. In the last seven plus years I have gone from being a fun, active, productive member of society in to a person that relies on others for help. I still want to do things, but my body won’t let me. It is hard to accept my new normal.