My Visit With Rheumatologist Yesterday
Posted 19 April 2007 - 11:36 AM
I asked the Dr. if I should ever expect joint problems that typically comes with systemic sclerosis (notice, I am using the proper name!) and he said he thinks what I have is what I have....meaning that he does not think I'll get more symptoms. I have sine sceroderma though, which means without skin involvement. This was good news because it seems like everyone else has major pain. My heart goes out to you all.
One thing he said that was not positive was that he does not think he can do anything about the full and short of breath feeling I get when I eat. I take REglan and he thinks this is the best medication out there. He basically told me to live with it. This I can do...
My goal now is to get in tip top shape so that my lungs and heart are as healthy as they possibly can be.
I hope everyone's having a good day and feeling well.
Posted 19 April 2007 - 01:10 PM
Thanks for the update. Sounds like good news regarding being a Cellcept success story and that your lungs seem stable. It is so good to hear wonderful news like that! Congrats! I am sorry that he can't do anything for the full feeling/short of breath you get after eating....I am glad that the Reglan does seem to be helping some with this and it is not incapaciting to you.
Posted 19 April 2007 - 02:12 PM
That sounds great! I can empathize about the eating. My digestive tract has been pretty messed up with scleroderma.
Posted 19 April 2007 - 03:09 PM
We all just learn to live with a lot - don't we?
Posted 20 April 2007 - 05:26 AM
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 20 April 2007 - 06:24 AM
Posted 20 April 2007 - 07:03 AM
Yes, it is extremely important to get as much aerobic and upper body strength building exercise as possible (for some people it is not possible to do much at all) with most lung diseases. However, it needs to be done within limits and with testing to make sure the effect on oxygen saturation levels is acceptable. That is why pulmonary rehabilitation is usually recommended for lung patients; it teaches how to best live with and make the best of things.
My husband has severe asthma and COPD, on 5 liters of oxygen all the time, and he tries to do at least a 20-minute walk or more every day, plus a sit-and-be-fit class for upper body strength twice a week. And, he stays as active as possible, even working as a part-time restaurant greeter.
However, he does all that under the advice of his pulmonary doctor, after having had pulmonary rehabilitation, with an oximeter, etc. It can worsen things to just take off exercising without proper instruction, saturation monitoring, and training in how to handle shortness of breath situations, etc.
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