Welcome~
And thanks for introducing yourself
You will find many wonderful caring folks here!
....and i TOTALLY understand your 'confusion' <<--- is that an oxy-moron?!

Actually, this 'miscommunication' ...or 'neglect' of communication.....seems to be happening more and more these days and IMHO is probably why more and more folks turn to these forums...... I for one have gained so much more knowledge and understanding simply by listening and communicating with the actual 'patient' as opposed to 'looking up' to the medical profession (and i say this with all due respect TO the medical profession).....

I found myself going in circles of frustration while trying to piece together the fragmented information I was receiving by trying to pin down a certain 'name' to what i was battling. I went to several specialists and went for '2nd' opinions......and ended up no more informed than I was when I first started reaching out for help........
So THEN i started doing the 'google-manic-attack' and ended up having myself convinced I had 101 different terminal diseases

Finally, i just started listening to ME.....and then, i hooked up with other people who 'sounded' just LIKE me!! And have since found that the SUPPORT by far outweighs the confusion........so this is where i live now.
Yes, we DO need medical personnel to oversee our conditions and symptoms...and yes it can be very difficult in finding the right caretaker, especially with the health industry bombarded and overflowing with case managements....but at least i'm not swimming around in a huge sea full of endless cyber-studies, leaving me scratching my head in confusion.

It's one thing to be sitting face to face with our Dr, yet, what gets 'dictated' into our chart may be a completely different conversation than what we were led to believe.
I hope you find the same peace and support that so many others have found here, simply by realizing that we are not alone in our struggles...and hopefully, you will get clearer communication within your healthcare team.
There are several forums right here at NT in which you may find helpful in what you describe. Most of us certainly know what 'pain' is all about.....unfortunately there are so many different TYPES of pain.....

At least it's a good feeling to know that we are not alone.
Welcome Aboard

Truly caring
Rae