Hi everyone!
I’m usually over on the systemic lupus forums since that’s my main diagnosis, but lately, something else has been really bothering me, so I decided to jump over here and ask for some input.
It feels like I can't get enough air. It’s that sensation where you desperately want to take a deep breath or let out a big yawn, but it just won't happen. It’s like my ribs are clamped shut and won't let me expand. It’s honestly terrifying!
The first time this happened was way back in '95—it was rare, maybe once a year, and it passed quickly. But now, it’s been happening constantly since Saturday night. I’m starting to feel really anxious about it. This past Sunday, I went to Central Park and grabbed some pizza, and on the way back, I felt so bad I decided to head straight to the urgent care clinic... The doctor listened to my lungs and said everything sounded normal. They checked my oxygen levels, which were fine, and then they brought up my lupus and lung health... I don't doubt them, since these issues actually started before my lupus diagnosis.
Years ago—back when this first started bothering me—I had a few allergy tests done (the kind where they prick your forearm), and it turns out I’m allergic to almost everything on the list except tobacco; things like dust mites, feathers, pollen, cotton, wool, and grass pollen... basically all the standard allergens. Back then, they gave me Histamine, and later Dihalar, which I took for about a year. After that, I had about ten years of peace. For the last couple of years, though, it has flared up once or twice a year. My chest X-ray is clear, and my iron and hemoglobin levels are totally normal.
Then, this past Sunday, I woke up at 3:00 AM feeling like I couldn't catch my breath and could barely inhale.
I don't have to tell you that the doctor looked at me like I was losing my mind... I just finished a spirometry test, and while the results should be ready this afternoon, the nurse told me right away that everything looks okay. The only thing is, I happened to blow into the machine right at the moment I was struggling to inhale. If she had called me in ten minutes earlier, it might have been different. Still, the results are technically fine, which is a relief.
One more thing: I constantly feel like there is mucus stuck in my lungs. I can feel this scratching sensation inside, but I can't cough it up, and it doesn't even trigger a real cough. I find myself clearing my throat constantly—just a little intentional hack because the sensation is so annoying—to move a tiny bit of that phlegm so I can swallow it. When I manage to clear it (though "coughing" isn't quite the right word; it's more like a clearing), my nose runs a little, and then I can finally breathe. But this has been going on nonstop since Sunday, and I am seriously on edge.
I haven't been diagnosed with asthma, but could this be an allergy flare-up? I have a friend with terrible asthma who told me the scariest part is when doctors can't hear any wheezing in your lungs; she said that happened to her too—where she’s wheezing and congested, but the doctors miss it entirely.
Though, I am currently on Medrol...
My GP prescribed a Flavamed syrup to help break up the mucus... I should mention that when my breathing gets difficult, Bisolvon has helped me in the past.
I had my chest and heart X-rays done yesterday, and they came back fine.
Eventually, things got bad enough that I headed to the emergency room at the Mayo Clinic:
Since I was already near the hospital after my spirometry, I waited for a friend near the medical center, and I started feeling awful. I decided to just go to the ER and ask what to do. The staff was very kind—the nurse at the desk even went to get a doctor immediately. She suggested I go to the Mayo Clinic first (since they are the specialists for pulmonary issues and are right next to the main hospital complex). There, they did another X-ray (even though I had one yesterday, they said you can never be too sure and their equipment is better) and ran blood work...
Anyway, regarding the spirometry, it says: "spirometry, parameters and flow-volume curve PEF slightly decreased, other findings normal." These are the values in percentages (A1/p):
VC MAX 109.2%
FVC 107.0 %
FEV 1 100.0.
FEV 1 % VC MAX 98.1
PEF 69.9
MEF 75 68.1
MEF 50 74.6
MEF 25 77.7
MMEF 75/25 73.7
I didn't write down the predicted vs. actual values because it would be a massive wall of text, and this is already plenty.
My blood gases are normal—at least that's what the pulmonologist told me (if Dr. H is reading this... pH 7.47, pCO2 32mmHs, pO2 93 mmHs, HCO3 23mmmol/L, tCO2 24mmol/L, ABE 1mmol/L, SBC 25mmol/L, SBE -0mmol/L, sO2 98%).
I'm just a little confused by one thing. The doctor said my PEF was fine, but on my report, I see that the PEF is listed as 69.9%.
While reading articles about Asthma and PEF, I noticed one value was lowered, suggesting my airways might be somewhat constricted and that therapy could be necessary.
Basically, my CRP is 1.1, but my white blood cell count is 14.7.
She prescribed me Rhinocort drops because I have an abnormal amount of mucus draining from my sinuses down my throat—it’s honestly gross.
She also suggested I visit the Pulmonary Clinic for interstitial lung pathology, just in case there's some Lupus lurking in the background. My X-ray came back fine. She mentioned the CT scan would provide more clarity, but she wants to be safe...
My gut feeling is that my lungs are filled with a pile of dried-up phlegm. Yesterday, I spent about an hour using my inhaler, and during that time, I could actually feel it melting, allowing me to cough up tiny bits while I breathed it in.
I’m really hoping this is just an allergy issue that will resolve itself. It’s a strange sensation when you experience something that makes doctors look at you curiously because it seems obscure or unusual to them, yet it clearly bothers you, and you're left searching for answers. I was thinking: if my throat and nose are dry, and my sinuses turn into a pile of concrete... why doesn't all that junk flow directly down into the lungs and bronchi? Since there's no defense in the upper airways, it all goes down, dries out, and becomes thick. Instead of whistling through the lungs, it just settles there and stays put because it's too dense to move. I know that sounds a bit like science fiction, but then again, every theory sounds like sci-fi at first.
So, the hypochondriac continues her quest... I'm waiting for my appointment at the clinic in February, meanwhile, I'm inhaling, sipping tea, taking Flavamed, and having sage honey...
Sorry for such a long and detailed post... I just haven't dealt with something lasting this long before. For the last 20 years, this used to happen once or twice a year and lasted maybe an hour or two. Now, it's been going on for a whole week.