10 years suffering, slowly got and getting worse, no diagnosis

[donnish]

I have seen doctors multiple times in different countries.

I have had 2 Spirometry tests, 1 Exercise stress test, 1 chest CT scan, 4 chest X-rays, 1-2 chest MRI's, 2 blood tests, and probably more.

There is something wrong with my lungs. I do have anxiety and this is what some people have chalked it up to.

However for 10 years the symptoms have gotten worse. I cannot run hard without having very cold and discomfort in my lungs. It's hard for me to do certain things like normal people because I feel I can't get good breaths. I had a year where I had very uncomfortable discomfort in my heart/lung area.

Just sitting down I need to take deep breaths somewhat often. Running hard my lungs feel extremely uncomfortable and cold and I get extremely exhausted physically after a short time.

Doctors said they ruled out Asthma, Tumors, and anything else that could be detected by these things. What else could it possibly be? I am desperate and have been for a long time.

Example: I was swimming at my gym, the lifeguard comes up to me to ask if I'm alright because I'm stopping between laps to catch my breath. Literally Grandma's an Grandpa's are passing me up with no problem.

I live in Japan, so easy communication is difficult. Even so, I am still at a stand still.

31/m/10 years suffering/50mg zoloft for 3 years for OCD and anxiety/white/5'10/160lbs/pretty good shape/

[knitter]

Hi has any one mentioned to you that you may have a problem with over breathing or hyperventilating at times.

Some one mentioned on here some time ago a book by a New Zealand physiotherapist called Dinah Bradley...about Hyperventilation Syndrome.

Just a thought as I am certainly no expert.....you could ask a health professional though.

Asthma has been ruled out you say...did you have a Reversibility Test?

I hope you find some answers soon.....best wishes.

[donnish in reply to knitter]

Thank you so much. I will look into it. I'm glad to get suggestions so I can bring them up to my doctor. I live in a foreign country so I have to translate them and do research before I see them. Thanks again!

[mrsmummy]

Hi donnish. Welcome to the forum. I am sorry you are suffering so but there is nobody here who can diagnose you. We are lung patients who are very willing to share experiences but we are not doctors. I hope you can get some answers from your medics. Do go back and explain to them what you have said here.

[donnish in reply to mrsmummy]

Thank you. I am just here to get some possible ideas to bring up to my doctors. I live in a foreign country and its difficult to discuss other possibilities. Unless I come to them after researching possiblilities they pretty much keep saying "we dont know". I hope I can just get some ideas here, I am well aware this is a forum and no one is a medical professional. Thank you again!

[Salmo]

Afraid I cannot help a lot and my comments may be completely off the mark but I'd have to say that anxiety can have a major effect on your perception of breathlessness and your breathing (CO2 build up).

I have fairly advanced IPF and for about 3 months had a terrible time with panic attacks and feeling like I was suffocating most of the time and struggling to catch my breath. Then I brought a finger pulse oximeter that measures my blood oxygen and that changed my life completely. What I discovered was that a lot of the time when I felt terrible (sitting/lying in bed at night with chest pain and feeling like I was suffocating) my O2 levels were actually fine (95-97) but I was simply hyperventilating and panicing (HR through the roof!). The simple knowledge that at those times I was not about to die made a huge difference and all of those breathlessness symptoms and panic attacks have gone away. I would add that I also started using the nose and pursed lip breathing technique for use at those times which has been very important.

A second issue which I wont explain in detal but the oximeter also helped identify an undetected arrhythmia I hade been having for about 2 years and which had also been causing some really unpleasant breathlessness and panic symptoms when exercising. Again this is just a minor issue now and does not cause me any concern know that I know what it is (I also have a monitor that specifically picks up arrythmias).

Perhaps all of this is rather a long winded way of saying you might benefit from self monitoring as it will help you know if something is really going wrong at the times you feel bad (and I bet there are some awesome monitors available in Japan). - Salmo

[donnish in reply to Salmo]

This is a very nice message to receive.

I have hyperventilated before when i called in a radio station and they put me on air. Each time I took a breath it was like the air kept piling up in my lungs until i could only get a bit. That hasn't happened since but I think on some minor scale it could be happening.

Thanks again! very helpful!