Snarlah
Don't know much about Ehlers Danlos except didn't you describe it here recently? Have fibro, can't work, have Social Security disability, largely thanks to a personal advocate who is on it himself and has helped others get it. Standards have improved re chronic pain and shronic fatigue, and you are much more likely to get it now. Get an advocate if you can (a lawyer will charge a fee, but your entire 4 years could be covered retroactively if it's done right. The main thing is lots of strong statements from as many doctors as you've seen or will see. Bureaucratic language3 is also crucial. I'm not the expert, but you sound more than qualified to me! Go for it. Retroactive would be a good amount of money for you. Also, I got it the first time through without appeal! Thanks to my advocate.