Originally Posted by Healthgirl

Did you have symptoms as a child?

When I look back, I had mild dysautonomia, heat intolerance, joints that would crack out and back in, but was pretty much a normal kid and it probably all could have fallen under an anemia diagnosis since I was anemic. Later in my early twenties, my SI joints would go in and out and cause some problems here and there and I became hypoglycemic, but controlled it with protein every 2.5 hrs and was fine, Thirties I felt better than I ever did, knew how to take care of my idiosyncrasies and had 3 kids by then. Two of my three had some of my "sensitivities", but the other had none. I can tell you that never in in my childhood or whole life until I got sfn, did I or my kids have nerve pain, crawling, numbness, or tingling. So I am having a very hard time accepting that a mutation is the answer to this. Obviously we were genetically predisposed to what ever happened, but life was pretty normal before this. Maybe I'm just in denial.

Originally Posted by LouLou1978

Hi Healthgirl - No i never had problems as a child. We were always quite well. Our situation was similar to yours, we all got symptoms about the same time. I mean, within weeks of each other. I asked the prof. and he shrugged his shoulders and didn't think it was connected. Healthgirl, do they they think you have EDS?

Originally Posted by Healthgirl

They all scratch their heads and say it must be autoimmune on top of EDS, but no one wants to keep trying to figure this mess out or try treatments.