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Mysterious shortness of breath: What has helped you?

Lung Health | Last Active: Oct 23 10:20am | Replies (3405)

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@gabrielm

Hi @eamon11235, that’s a strange symptom that you describe, about the hands and feet turning red and burning. I wonder if it has anything to do with blood circulation or maybe some kind of reaction to something along with the SOB. Have you any other tests done like heart tests, I’d imagine they tested for asthma during your lung function?

I do find that lying down seems to make it a little worse. I can sometimes sleep fine lying down but I do find more comfort in sleeping sitting mostly upright. How about you, do you experience a difference upright vs lying down?

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Replies to "Hi @eamon11235, that’s a strange symptom that you describe, about the hands and feet turning red..."

They did an ECG on my heart and everything was normal. I've had a history of asthma since I was eleven, but I went to see a respirologist and she said my pulmonary function test was essentially fine and that it was likely something else that was contributing to my breathlessness.

She suspected that I might have paradoxical vocal cord disorder -- a condition in which the vocal cords randomly snap shut during inhalation, so I went to see an ENT and the ENT didn't observe it upon examination, however she did notice that there was some redness irritation surrounding my vocal cords. She suspected GERD and put me on pantoprazole; I think it helped my GERD, but it didn't help my SOB. They even put me on 50mg of prednisone for a week to see what would happen and that still didn't help.

My guess for the burning hands/ redness is that there is some kind of compensatory reaction in which my blood vessels spasm when they don't get enough oxygen -- I also have a history of Raynaud's, which is the complete opposite of the burning hand's syndrome (erythromelalgia). My doc suspects that I have some sort of autoimmune disorder or something.

When I lie down it usually makes me breathe better, and when I sit up straight it feels like my diaphragm can't stretch down all the way, which has also lead me to think that I have some sort of hiatal hernia, but I don't exhibit most of the symptoms: mostly just mild GERD and hoarseness.

Sorry for the long run-on paragraphs. I understand how frustrating it is to experience SOB, especially when there are no ostensibly physical causes. My parents and SO all think I'm starting to lose my mind over this, and it really has been taking a toll on my mental health. It's become incredibly difficult to exercise. I used to be able to run half marathons and now I feel like I can barely make dinner sometimes. I have a history of panic attacks once in a blue moon, but they only started after my physical health started to decline, otherwise, I'm a pretty relaxed person. So I also don't think mine's anxiety-related either. Anyways, I understand what it means to struggle with SOB, and it is not a fun experience. I've had a hard time trying to convince the people around me that this isn't some kind of psychogenic disorder. Have you encountered people who try to challenge its validity? If so, what have you done to overcome this?

Best regards & take care,

E