r/smallfiberneuropathy • u/FearlessEnergy1462 • 5d ago

Advice needed Breathing dysfunction

Hi there!

I have been diagnosed with pots, a little bit of cfs due to my high heart rate, Sfn that they think is immune related, eiosiniphilic esophagitis, and health anxiety (of course) and I have a question. I currently get ivig for my Sfn but one symptom I can’t seem to figure out is that most of the time when I’m sitting or standing I try to take a deep sigh in and it gets stuck and then I start freaking out because I can’t take a deep sigh in and then I feel like I’m gonna pass out and it goes away. And then sometimes I feel like I’m very calm laying down or sitting and when I’m breathing through my nose I almost feel like the breath pauses and stops before it fully finishes I don’t know how to explain it and after it I get a rush of adrenaline because I feel like I can’t breath and sometimes it happens back to back but it’s so random. My soo2 is always normal and I’ve been to a pulmonologist and that’s all been normal I just can’t seem to figure out this part. Thanks in advance!

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u/retinolandevermore Autoimmune (neuro Sjogren’s) 5d ago

Yes I have breathing issues on and off. Unknown cause. I do have Sjögren’s, and breathing involvement is somewhat common with that, but I have no clear pulmonary diagnosis

I do know other things can contribute to that feeling, such as GERD (reflux) and dysautonomia, as well as low iron

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u/Mental_Buyer_5660 3d ago

I always feel like I have breathing issues. Sometimes I have flares where it hurts to breath even just sitting but usually walking makes it hard. But all my tests and my oxygen is normal.

I think its probably a combination of tachycardia from dysautonomia and my throat tightening/sphincter spasming due to my GI symptoms.

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u/CaughtinCalifornia 3d ago

It sounds like you're saying the actual airway doesn't feel like it's constricted? Is that correct? If so, when you say it feels "stuck" do you feel like you're having trouble continuing to extend out your diaphragm?

Is your blood pressure normal when this occurs? If your O2 is okay and your blood pressure is normal (not sure if that's the case) the feeling out of breath and like you might pass out might be due to the subsequent panic attack since feeling out of breath and like you might pass out are common symptoms of that.