Loretta
I was diagnosed with this dreaded disease in Sept 01. I have good days and bad days,some days I have so much pain it's unbearable and other days it's not quite as bad. I have extreame fatigue and all the symptoms of fibromylasia which I found out is secondary to the sarcoidosis. Mine is in the lungs and I have pulmonary fibrosis as a result. I am on oxygen 24/7. On good days I can sit w/o it and my saturation stays 94% then other times it goes to 88% especially lieing down. As soon as I get up and walk it drops immediately as low as 83%. So I wear it continuesly to prevent cor-pulmonary which is right sided heart disease.My Dr.doesn't understand why I have so much pain, of course, so he wants to send me to a pain clinic. He has prescribed Lortab but is afraid I will get addicted to them. I have been on 80mg. Prednosone daily initally and now 20mg.day and may have to start on another medication because the Prednosone is not working as well as my Dr. had hoped. If you would like to email me,I would be happy to talk to someone who understands what we're going through. Barb