Hi Joanna

I haven't been on here in a while. It is likely that I myself also have EDS, although it was never confirmed. I gave up on the doctor train, because even if it was EDS, there wouldn't be much they can do for me. I am fair skinned, hypermobile, SFN, other autoimmune illnesses. I'm negative for every known cause of SFM. My pain has diminished greatly, though, most likely due to the nerves having died off. I have lost a lot of sensitivity all over. I did have muscle changes, but was negative for all muscle disease and motor neuropathy. The muscle stuff comes and goes, and exercise has helped, but it takes patience and had to be gentle and slow build up or I'd be riddled with twitches and cramps.

When my SFN came roaring to life a few years ago, my skin changed freakishly and dramatically as well. That as the scariest part for me. I could see all my veins like a road map, and my skin got see through and is more delicate. It does seem to have slowed down a bit, but it is still there. I had tons of pain at this point, and my skin was very sensitive in general, so I started making my own skin products. I know it takes time and some $ to do this, but it isn't as expensive as you'd think once you have the ingredients, and you can control the ingredients for you. If you want, I can PM you some recipes I use. They did help keep my skin calm, and improved the texture. My skin may have been a mess, but at least it was soft and looked nice to others haha. Small bright spot, I know, but I guess you take what you can get.