Hello @mary1121 -- I see that you are new to Connect and I would like to Welcome you. I know it can be distressing not knowing all the answers and what to do. I can tell you that you are not alone. It's good that you are looking for information and asking questions. That means you have a strong desire to learn more about your health and will help you be a better advocate for yourself.

I thought you might find the following TED Talk helpful.
What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
-- https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.

John