Powered By
Hi everyone,
Well I'm pretty frustrated and want some answers. I'm a 22 yr old female, diagnosed with SLE about 2 years ago now although had shown symptoms for years before. I started having joint problems young, around 10-12 years old. Everyone called me "double jointed" although that's not even an actual thing. 🙄 So I could do cool things like twist my arm in a full circle, make my top joint of my fingers lock in place, shake my eyes erraticly etc. So now a good 10 years later, I'm now able to… read more
Wow thanks everyone! I'm going back to the orthopedic in 2 weeks so hopefully he can give me some input on the potential Ehlers-Danlos... For those of you that have both lupus and Ehlers-Danlos, is it hard for you telling symptoms apart?
Hi Uprooted...due to the COVID issue I haven’t been able to go to the doctor’s yet. I will post when I do though! I hope we both find answers soon
@A MyLupusTeam Member do you have an update? I’m dealing with the same issues and awaiting geneticist consult!
Good morning I was diagnosed about 5 years ago and it has been a roller coaster ride I never have a day that I feel good. Some days are thankfully better then others. I feel different hour to hour and day to day. It has been very frustrating. Aside from identifying my triggers I have learned that this disease is very unpredictable and I've learned to ride the wave. I enjoy the better moments and I take care and nurture myself through the difficult ones.
I was thinking EDS the entire time I was reading your post. Glad it was already brought up here and that you will have them test you for it. Btw, there is genetic test for various types of EDS, except for one, but I am sure once they start looking into that direction, they will be able to figure it out. Best of luck!
Join
Your Privacy Choices
