I’m so sorry you have to deal with your debilitating illness ! I too have a form of a connective tissue illness plus pain n extreme exhaustion from fibromyalgia ! It’s truly tough! BUT
I finally am going to a “ top notch “ rheumotologist in Manhattan on Monday who was head of dept of Rheumatology at Hospital for Special Surgery -
I think a big part of the equation is to find and go see the top rheumotologist you get to.. (my best friend recommended me to dr paget )
I too am nervous about my upcoming appt, but mainly because my energy level is so low , it seems as if it’s a momentous task
But i hired a car service, my daughter is coming with me - and I’ll make it happen
Is there any way possible you can find the very best rheumotologist not far from you? Maybe call the largest hospital in ur area and ask who the head of that dept is n try to get soonest spot available
Just because nothing shows up in bloodwork, that’s not always a conclusive answer
You are presenting with lots of obvious “eye-seeing “ symptoms
Good luck sweetheart!
You are NOT alone as i feel your frustration
Over last several years, I’ve seen 5 rheumotologists and nothing has helped me - a few of the meds recommended to me , i wasn’t able to tolerate
Let me know how you do., but get to the best dr you can find and hopefully u will be lucky enuf that he w take ur insurance too
Lynda L