I hope you are finding good support for the LPHS folks. We have had maybe 3-4 people with LPHS over the last 5-6 years. It's rare enough that we don't see many people with it.
There are also other kidney diseases that cause chronic pain. One is something my SIL was diagnosed with a few months ago. It's called PKD or polycystic kidney disease. Basically cysts begin to grow on the kidneys. These can cause horrible back and loin pain. The only cure for this is transplant but in the mean time the patient suffers from chronic pain.
I wish you luck and less pain every day!
Moderator on the Fibromyalgia and Chronic Pain forums
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
Use the talents you possess, for the woods would be very silent if no birds sang except the best.