Caroline, you are a "zebra" to be sure. Have you and your sister had genetic testing? I am glad you have some mobility still. Do you have any kind of exercise program that you follow? What medications are the docs suggesting?
No there has been no suggestion of genetic testing as yet. Because I have an unexplained pain in my right leg which my consultant thinks has no relation to the disease but is due to an old fracture site (seen numerous doctors who can give me no answer why I am in pain) I have only been prescribed Pregabalin (which does no good whatsoever). I am also on Amytriptyline for my restless legs but this may have something to do with disease. I find that it is difficult to turn over in bed at night as I get stiffness and pain - could this be something to do with IBM? (And thyroid medication). I have seen physio before I got the diagnosis and they said because my muscles are so tight all they could do was give me stretching exercises to do as he had no idea what was going on with me. What is you story? Also what does 'zebra' mean? It's a term I have never heard of!
Zebra is an informal term for a patient with a rare or unusual condition. Run-of-the-mill disease patients are "horses," but those who are hard to diagnose are "zebras." I like it because it makes rare disease patients sound special and beautiful. :)