I have just found this website. I was diagnosed with this condition around 25 years ago. I am now 55 and have had the condition for 30 years.
I would be very interested to find out what caused this condition in order to hopefully find a cure. When I was 18 I had numerous xrays for a kidney problem all taken in one afternoon including die injected into my vein. Has anybody else had this treatment? This is all I can think of as I have always been in good health. This condition first began when I was pregnant so there could be a link there also.
I have noticed that HRT has helped lesson the condition but have come off this medication. It has since flared up dramatically.
There could also be a link with Rheumatoid Arthritis which I have suffered on and off for the last 14 years, which has sometimes been acute but treated with steroids this flares up every few years and can get really bad.
Please let me know if you have any information on this condition, I am very eager to find the cause and the cure, hopefully we can work together and find out some more information.