I am sooo confused. Doctors don't seem to help explain things too well. Wonder if they really know what is going on with me. Even though, we may have the same illness,it acts somewhat different with each of us. So, I can see why the doctors might have a hard time. Hoping that someone might have had the same symtoms as me and can help.I have had PM since 1990. It started in my lungs. Breathing was a little hard, but got better as I got stronger. Have had PFT and chest x-rays often. They show some scaring,but haven't changed too much through the years. Have been up and down with the meds due to flairs. April of 2009, breathing seemed to get worse and muscle strenght wasn't good. Doc raised my pred to 40 and changed methotrexate to Imuran. Pulmonary doc did PFT and 6 min walk test. oxygen went down to 87, so he put me on oxygen at night and during activity. Echocardiogram showed a little increase in size in right side of heart. Doc didn't think it was bad enough to start meds for it. He said they are very strong and with the other meds I was taking didn't want me to take them yet. My strength has gotten back to what is pretty normal, only now I can't do things because I get so short of breath even with the oxygen that I have to keep stopping what I am doing and sit until I can breath normal again. I am sorry this is so long, but thought a little background would help. My question is, if you think it is helpful to keep doing things even though I get so out of breath? Is it helping in the long run to make me stronger so I can do more. Or could it make my lungs and heart worse? asked doc why I still get so out of breath even with the oxygen. He just said, well, you know you have PM too. Asked if it would help to walk on the treadmill, he said as long as I didn't JOG?!? If I could jog, I would be a happy person! I know I am very lucky to be able to do all the things I can, and certainly am not going to give up trying to do more if it will help. Just don't want to push too much and make things worse. Also, is there any therapy I can be doing to help? Any advice you can give me will be greatly appreciated.
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