I know what you mean and how your feeling. I have been dealing with this for 10 yrs now and I simply wonder how could all these drs not see what I'm feeling. But I know my Internal medicine dr has cried with me as she relates and is genuinly concerned. I have the same relationship with my lyme specialist. You need to be your activist! Don't give up until you are satisfied. That's what keeps me going. I need to know as I have grown children and they are now starting their own families. I don't want this to go on another generation, we have a right to know what we are dealing with.
I have found relief of pain with accupuncture and massage therapy. This is keeping my lymphatic system moving. Nutrician is vital, plenty of water. Cleanse your kidneys and liver with real lemon juice in water (one a day). It has been a God sent for me. Nature is best. Good luck in your journey.