Ideas?!

For the last few weeks I haven’t really felt well. But since Sunday I have had trouble breathing, I feel like my lungs stop taking in the breathe before it’s filled (if that makes any sense). Prior to this week- I have had a few issues with this but since Sunday it hasn’t stopped. I am so exhausted and just can’t hardly stay awake. I have been diagnosed with SLE and Raynauds and IBS. Other than that nothing. Monday I went to the doc and they ordered a few tests chest x-Ray showed hyperinflation in my lungs and I had an artillery gas lab drawn and she said it showed that I was hyperventilating. I don’t have any appt with a Pulmy until April 28th! There is another test ordered but nobody has called to schedule it yet. Has anyone else had these issues? Or have any ideas to help me? I can’t do anything without feeling like I will not get enough air! I know the doc are trying but sometimes I really feel like they don’t understand how it’s like to live this way.

My shortness of breath started out that way but I had a lot of pain in my sternum and plursily with it 2 years ago , so I understand..my primary put me on 400 mlg ibuprofen and a rescue inhaler until I saw my now pulmanologist. Now my situation is evolved into something more severe ... I don't want to scare you into thinking you situation will turn into mine ,im a difficult case :) now i need a few different inhalers twice everyday and the chemo therapy (cytoxin) im on once a month definitely helps keep my lung/airway disease in check with very little plursily and chest pain. I know it's scary to not pull a full breath but please try not to stress too much because it will cause anzity which will make it even harder to breath! Definitely ask your dr if you can at least have a rescue inhaler until you see the pulmanologist!?!?

That happens to me a lot. Like I can’t get a full breath. A lot has to do with anxiety. Have you tried Xanax?

I had problems like that twice, I could not get air or talk, but could breath through my nose. My blood pressure would drop. I was then but on a lower dose of BP medication. I have not had the problem since.

No, I haven’t ever been on Xanax. Or had any issues with anxiety. It’s just not getting better. And I really feel like it’s my lungs- I have a test scheduled Tues- pulmonary function test- so hopefully after that I’ll have some answers. I also found out my grandma has copd- I am not smoker nor have I ever been- but both my parents have always been smokers. So I grew up around it. My grandma was also not a smoker. So I don’t know!?! I really feel like the not knowing is what’s stressful!
Thanks for all your thoughts!

Hi!, you are right-they Really don’t know how to or understand how it is to live this way!!! That is the sad part we hate . But hang in there , keep fighting , stay strong , one day all this will come to a end for us that Lupus has invaded our life!..Beverly l.