Ehlers-Danlos Syndrome Support Group

I am 34 and have been dealing with EDS since I was 7. If you give up on your self everytime someone tells you, you shouldnt be in that much pain or you should just stay at home and collect. You will be behind the wall for the rest of your life. I have 4 children and they all have EDS too. Keep pluging there is support out here not many of us but enought to keep us going. The biggest thing is dont let your self get depressed. Go to counceling, go to church, temple what ever your out is. do make a network of support that is local. People that dont live with this kind of pain have no I dea how draining it is and how hard it is to get out of bed everyday. Any time you need to vent please let me know. I have been there and go back on any give day. And YES you can collect but only if you need to. there are other thing like if (it) effect your legs and hard for you to get around get a handicap plackard. It helps, and its great around the holidays when there is no parking. Getting your self to one level living no stairs is huge too. All of these thing help some. You are in my thoughts Good luck. PS i work for a great group of doc that give a lot of of time off but i do have supplemental disability health care from the state and my oldest son get SSI he is bad. Just go to your local gov web site and it will have a search section just put in ssi or health insurance. again Good Luck here if you need me Robin

Chin up dear... My story was the same as yours... The doc is right, the meds. don't help... When I eat right, drink enough water, go on regular walks, and get plenty of sleep, my pain and fatigue is tolerable, but when I fall off the wagon in any of these areas, I pay... My children are the same... I used to like bowling but now wouldn't dream of it because of my dislocating shoulder. Know what you can and can't do and stick by it... The diagnosis can feel ominous at first, but knowledge is power and you can build a good life with it... hugs, lylajean