MamaofFour

I know! I swear it makes everything more manageable just k owing your not alone! Not that I wish any of this on anyone, but I know exactly what you mean!! I promise you'll be the first to know if I EVER get any answers As the years go on I'm realizing more and more just how many of my daily symptoms are attributed to Dysautonomia and I never put it together. Fun times!!! Take care! Happy New Year!! Jess

I deal with exactly what you described all the time! It ca. Come and go and vary in severity, but it hurts to the touch, can be excruciating and follows no patterns or activities that would cause such pain. I have been a massage therapist for 15 years and worked with Chiropractors and tried every modality I think! And while those things help my "normal" muscle and spine issues no help seems to come for this "other" pain that plagues me chronically. I have been dealing with a very severe bout of it for the past three weeks that will not seem to budge no matter what I do, under my arm and up into the front of my shoulder and chest. No fun! I wish I understood what it was and where it comes from. Sorry you deal with it!! It seems there is no end to the fun of Dysautonomia!! Good luck, I pray you get the answers I have yet to find. Hope you feel better

I thought I was the only one! I get dizzy just going to the Fifth floor to see my Cardiologist!

Yes, I think it's very important to know you are not alone! We probably all feel that sometimes, I know I have! And I know how frustrating it is to WANT to do so many things but never k kw if you'll be up to it at the time, and like you said, having to choose sometimes between the activity itself and the ability to get ready for it( hair, makeup etc..) I think we all have to find our "normal" as frequently changing as that is and learn to accept and love ourselves as we are. The more I worry about how I will feel when I get somewhere the more debilitating our condition is. It is so hard, and not having people around you who understand does make it scary, but go slow, find what you want to live for( as you are now), you were made to be exactly who you are so don't sell yourself short. We are not given more than we can handle and even though it really ***** sometimes, you are stronger than you think Give yourself permission to have bad days, and try to find the things you want and enjoy that fit you. There will be others that have the same interests and will be compassionate and understanding and support you. Dont give up! You can have anything you want from life, we just have to be more patient in the getting sometimes And I have to say, you may not always feel like laughing, but I bet you have a great personality! I have to agree with badhbt, that unicorn thing is hilarious! I actually quoted it to my husband the first time I saw it months ago Now sorry this was long winded, this is the first time I've ever written anything on here. But when I read your comments you were on my heart all night and I wanted to make sure you knew a lot of peoe understand and care and there is HOPE!!