restrictive cardiomyopathy & symptoms

I was diagnosed with RCM about 5 years ago. I take several medications twice a day. Since being diagnosed I can not find anyone with like diagnosis. I have recurring purple lips that at rest is just a ring around the outer lips. Sometimes when I am feeling especially weak or tired my lips turn very purple and have been a bluish color a couple of times. I experience exhaustion at any length of exertion. I experience very strong arrythmic contractions that at times make me light headed, or short of breath. I have been treated by three different cardiologist who have no experience with my condition. I would love to communicate with somone with the same diagnosis, or a cardiologist who has actually treated a patient with RCM.
Thanks

[runnrathrt]

I was just diagnoswed with RCM this year.  I only have problems with extreme exhaustion on exertion.  I do have a very brillant Cardiologist, who has helped me. He does not like to talk in detail though. It is frustrating, but he's very good.  I still do not know much about the disease.

runnrathrt