In August 2010, I began experiencing severe breathing difficulties. I've since been hospitalized on numerous occasions for trouble breathing. I've coughed up blood in the past and now become cyanotic (lips turn blue) once a week on average.
Strangely, every time I've been tested, my oxygen saturation has been normal. I've heard several diagnoses ranging from interstitial lung disease to POTS (I had several episodes of syncope when this first started). I haven't been able to wear a "normal" bra in over a year. I can't eat a full meal. I can't exercise. I can no longer sing. All of these things turn me blue. Literally.
I finally went in for an exercise stress test today and found out that my diaphragm is incredibly weak. As a 24-year-old female, my PEmax and PImax scores should be roughly 138 and -91, respectively. My scores were only 62 and -61. I have EDS III and probably POTS and Lupus (undergoing more tests), but I have no cardiovascular issues other than tachycardia, I've never smoked or lived with smokers, I exercise regularly (or try to), and am not overweight. The sudden breathing difficulty seems very...random. And frightening.
Has anyone heard of or experienced this? A weak diaphragm? Could this be related to EDS? I know we're prone to muscle weakness and atrophy, but I've been told by previous pulmonary specialists and geneticists that EDS shouldn't cause this. Help!