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Mysterious shortness of breath: What has helped you?
Lung Health | Last Active: 5 days ago | Replies (3422)Comment receiving replies
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
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I wonder if there are more tests your doctor could do to check for an autoimmune disorder. It sounds like you could also be checked for a hiatal hernia; depending on where it is if you do have one, that could interfere with your diaphragm.
I hear you about it taking a toll on your mental health. Early on when it first started for me, it certainly took a toll on mine as well. Lots of uncertainty and wondering it it would get better. As I did breathing exercises and it improved, it was no longer an issue but when it returned about 4 years ago and has remained, I learned that it's a condition that I may be dealing with for a long time. Since I now have a routine of breathing exercises and physical exercise which helps keep it at bay, my mental health has been steady and improved. I have adopted a 'it is what it is' and acceptance mindset but never losing hope that my breathing will be normal again.
I can't exercise rigorously like I used to, and every now and then like you, I would have to delay some tasks as I experience 'flare ups' of the air hunger. But I have learned to wait it out and tell myself that I will be fine and it will be better again. Knowing that there are ups and downs and knowing that the downs are temporary keeps me sane and my mentality consistent.
When it first started, I did encounter people who thought it was just in my mind or thought it was something else. I don't as much now since those around me know it's something I've been dealing with a for a while, but how I overcame it was simply to relate to people who believed me as well as others who have been dealing with certain conditions, and talk to them about it and not really bring it up to those who didn't believe me.