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Mon, Sep 9 7:29am · Mysterious shortness of breath in Lung Health

Hi @criley2k. First of all, I'm so sorry that you have been dealing with this for so long. I know how you feel! It's been 7 years for me since it all began. I find it strange that your muscles are weak from the breathing condition. I wonder if there is something else going on that's causing all of this (breathing + muscle weakness). With all of the doctors you've seen, I assume they've done a bunch of tests that show everything normal.

My respiration has not reset to normal, but it has been somewhat stable for the past 2 years or so. I still struggle with the air hunger, but it's not as bad it was when it started. I do moderate daily exercise which includes about a 2 mile walk and then moderate weight lifting. These seem to help keep it stable. I also do "maintenance" Buteyko exercises about every other day (I do Steps in the morning). I have stopped measuring my CP because, like you, I couldn't really get it up and keep it that way. So I just make sure I can do 90 – 100 steps and if it gets to where I can do 90 and no more, I increase frequency to daily and that seems to get the Steps score up to around 100 after a few days. So that's how I maintain Buteyko. It doesn't help enough for me to do it daily or more than once per day. It provided great relief in the beginning, but like you experienced, it has since provided diminishing returns.

I am able to do pretty much everything normal – I can function at work just fine with not much thought to my breathing. Sleeping is hit or miss; some nights I can sleep just fine in my bed and others I struggle to breathe so I have to sleep sitting up on the couch. I can do my walking just fine, but weightlifting I'm limited by my air hunger. The harder I push, the stronger the air hunger so I can't push too hard when I do exercise. Cardio is pretty much out. Every now and then I'll do a very light jog if I can handle it, but I use my breathing as a gauge. I don't push it too hard like I used to. That seems to make it worse.

So now, I'm not even sure that it's "hyperventilation". I really feel like I don't hyperventilate. In observing my own breathing, it is very normal. It's just that the air hunger starts to creep in after a few breaths, regardless of how fast or slow I'm breathing. So something, in my opinion, is causing this feeling of persistent air hunger that nobody can put their finger on. My hunch is that it could be gastro related. Many of us on this forum seem to have some sort of GI issues. Though correlation does not equal causation, I can't ignore the number of people that have what we have also have GI issues.

So that's where I am today. It's tolerable and stable, but still a bit uncomfortable. It's been this way for a couple of years. Your natural remedies are very interesting. Same thing happened to me when I took vitamin B12 and iron, as I'm sure you read in the OP. Don't know why it would've helped for a short while, then come right back.

Keep in touch, I'd like to know of any progress and I'll share any of mine as I continue to search for answers.

Fri, Jul 19 8:42pm · Mysterious shortness of breath in Lung Health

Hi @jack10525. The thread is alive and active! Not sure if you've read through all the comments, but if you haven't you might go through them to see if anyone else's symptoms match yours (there are a lot, but worth the read). You might be able to find similarities with others. There are also suggestions for different things that might help you manage it, like breathing exercises. Looks like you have GI issues, like indigestion and maybe GERD. Did the Prilosec not help with the heartburn or the breathing? You might want to try a different PPI or GERD medicine. GERD seems to be common among many of us on the thread, so wondering if there's a a connection.

Mon, Jul 8 8:48pm · Mysterious shortness of breath in Lung Health

Hey @aea1205. Glad the meds are helping! Keep us posted.

Sun, Jun 9 10:37pm · Mysterious shortness of breath in Lung Health

@alureon, sorry to read what you're going through. For me, intense exercise made my condition worse. I remember when my breathing was fine for a while and then I increased my running and ran faster and harder, my air hunger came back suddenly and with a vengeance. I had to stop exercise for a while and start very slow again and work my way back up. I now go for a run maybe once or twice a week, and mostly do light to moderate weightlifting about 5 times per week. My runs are really mostly walks with short bouts of jogging in between. I just listen to my body and if I feel the SOB coming on stronger I walk the rest of the way home or stop if I'm on the treadmill. But weightlifting seems to help me the most because I can control my breathing and work out as intensely or light as my breathing will allow. You might consider incorporating light weightlifting using only nasal breathing rather than hard running with maximum breathing. At least for me, I've learned that it doesn't seem to have anything to do with lung capacity since my lung capacity tests have all come back normal. Intense exercise doesn't help to expand my lungs, even if it did, the SOB would still be there.

Regarding the SOB vs. air hunger, yes I think we all have the air hunger feeling where we can't satisfy a feeling of a need for air. I guess for me shortness of breath means air hunger, where as "out of breath" equates to a normal feeling of a lack of air while exercising, but in that case it's not uncomfortable because heavy breathing still satisfies the need for air. Semantics, I know, but in my mind shortness of breath means just that, that you're "short" of breath since the "need" doesn't go away even when you take a deep breath.

Anyway, I hope you improve soon. Keep us updated. I don't think it will hurt to try something different; taming the exercise and doing shorter and lighter sessions while incorporating weight lifting and using light, slow breathing. That's what at least maintains my breathing at a manageable level.

Wed, Jun 5 2:41pm · Mysterious shortness of breath in Lung Health

@godislove I know exactly how you feel. Look back to the comments for my solutions. It’s not 100% there but I would say it’s like 80-85% most of the time. Very manageable and tolerable. It wasn’t before. It was horrible. Feel free to private message me. I can outline to you what I’ve done. Like @godislove we got to a point where nothing is off the table. Submit your case on crowdmed.com if you have to. Yo have nothing to lose.

Mon, Jun 3 9:51pm · Mysterious shortness of breath in Lung Health

@kakas, thanks for letting us know! Keep us updated on what else you find out.

Mon, Jun 3 9:50pm · Mysterious shortness of breath in Lung Health

Hi @laylabug, Thanks for the suggestion! I was looked at for PAH. Tests came back negative, so nothing there but hadn't heard of the secondary PAH. Will have to look into that. Thank you!

Sat, Jun 1 3:36pm · Mysterious shortness of breath in Lung Health

@laurasue I think it was still good that you got checked out. If anything you ruled out a bunch of things and you know that you're in good health otherwise. I'm going to try CrowdMed soon to see if they might find something hidden that's not well known, and even tip them off to this forum so they can research what others are going through as well.