I had a all of your symptoms. Yes it is inflammation. I have Polymyositis, with Mixed Connective Disease, Sjogrens, and now Interstitial Lung disease. The Polymyosists is translated to many (POLY) muscle (MYO) and inflammation (ITIS). my Ck was at 9000 before any action was taken, I almost died because of the wait game the doctors put us through. Prednisone, although a bad drug on the body will bring you back, some people have bad side effects, but I know it saved my life. Get your labs and see how high your CK is. Normal is 150 I think, although it depends on the labs and what scale they use. You have a right to them. Keep a folder,and get a copy each time you have a test done. Time will pass and you forget what drugs they have tried that did not work. I have been sick for 8 years now. I finally got a new rheumatologist. He is trying new medications. I am willing to try just about
anything myself because the Prednisone is taking its toll on my body and is not controlling the disease as well as it was in the beginning.
I got so I could hardly breath or swallow, my heart pounded a million miles an hour (it is a muscle too) along with the esophagus. It can be a life threatening disease if not treated. Keep calling, crying,and bugging them. It took me 2 months to get pain meds in a high enough dose to take my pain away.
I waited 3 months to see a Rhumy and then it took him another 3 months to take a CK test, stupid head, then he wanted to do EMG (electric needles test) then a Biopsy, by the time he decided it was Polymyositis I was in a wheelchair and out of a job that I had for 17 years! 60 mg of Prednisone is what I started on, what a relief!! It is a miracle drug. I am now on Cellcept, and down to 12 mg of Prednisone. I have had 2 infusions of Rituxan. All have really helped. Remember SQUEAKY WHEEL GETS THE GREASE.....You have to make yourself heard, don't take no for an answer. call the rheumatologist and tell them you are desperate and would like to be called if there is a cancellation, PLEASE...
Good Luck, Karen
Post Edited (karen7043) : 8/27/2009 10:40:43 AM (GMT-6)