Hi Martiz,
Now I am struggling with major exhaustion. RSD is reflex sympathetic dystrophy syndrome. It’s a chronic pain syndrome. I spoke with the office a little over a year ago and it was thought that, over these past 8 years, I have likely gone from fibro to RSD. Sorry if I transposed letters before.
Ugh! I do have appt w/ specialist (endocrinologist assistant) tomorrow and am not prepared. I’m so tired. They’ll probably pat me on the head, tell me it was nice to see me, and I’ll be exhausted out of my mind and have to rest for a good while before I can head home. The person I’m seeing is so darling and well-meaning too. Sad, really. I was hoping for suggestions about this appt but won’t have time to see what anyone says.
Thank you for mentioning cardiologist familiar w/EDS. Mine is supposed to be familiar w/genetic disorders and the heart. Probably genetic heart disorders, really. I really think he is wonderful too. I love his nurse and staff is very good. Still, my care is so fragmented and nobody understands. He did put me on Losartan (which is supposed to be good for improvement of smooth muscle….. blah blah, don’t really get it). I know Losartan has been used in Marfan studies.
Meanwhile, I just flounder.
You’re right about the Lyrica. I’m not sure how much it helps but am sorta scared to stop taking it. It was rx for fibromyalgia. I want to check into what you said though. Hmmm. I don’t even think I have endorphins anymore. Awful. Maybe because I’m so weakened/wiped out all the time or the pain or nausea and GI struggles.
My fingers and tips are hurting. I’m tired and not thinking straight. Ido want to talk to you more. Thank you.