Extreme Chronic Fatigue and (undiagnosed) lung disorder - PLEASE HELP!

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Hello, dear fellow patients and health professionals. This message is my desperate and possibly last attempt to get any help with my mysterious condition. I understand that I am very likely not alone here with my troubles, but so far my personal research didn't get me much of a help... I'll try to keep my story as short as possible to not waste your precious time, but of course feel free to shoot any questions in the comments below if you need more details. 

I am 32 y.o. male, currently non-smoker (smoked a pack/day between ages of 16 to 24). Exactly three years ago in the span of one week, I started feeling pretty spaced out and lightheaded. It was accompanied by a heavy sleep disorder, chest pain, and some breathing issues, though the last one wasn't that obvious at that point. I should mention that prior to that I smoked at least a pack a day for 3-4 months due to some stress in school. My family doc ran all possible tests (blood, chest x-ray, spirometry etc.), but everything came back clear. After it started, the condition never went away. I tried a few more docs during the next year, same results - everybody suggests depression or some mental disorder (bipolar etc.). After living a year with heavy fatigue symptoms (memory loss, constant brain fog, muscle pain, sleepiness etc.) I started noticing that my shortness of breath is getting worse and some other physical symptoms started to show such as bluish fingernails with changes in the shape (curving, lines across thumbnails) with occasional pain, freezing feet and hands at home, bluish lips.. heavy flu-like symptoms without temperature that never go away. Since then I've done several thorough tests on my heart, lungs ( at least 3 spirometry tests inc a stress test) brain, stomach etc. with no conclusive diagnose. My life has turned into a total hell and I am gradually giving up on any hope lies ahead. So far I lost several jobs because I can't function normally on a daily basis. And the worst thing is that nobody believes my story, including my family, though I'm trying not to share too many details with them to avoid all the stress. I also can't exercise as my fatigue and shortness of breath keep getting worse and on some days I can't even get out of my bed. I know there are lots of people struggling with the similar symptoms and I'm of course in no way saying that my case is unique or needs some special attention... It's just that I am becoming so desperate after the endless number of useless tests and healthcare professionals who really don't give a damn, that I literally considering ending my life. I just can't see myself struggling like that without a chance living the active life I used to live. Again, guys, I don't mean to discourage anyone here or say that my struggle is worse than others... I love life and I know it's absolutely worth fighting for, which I'm doing every day, but the faith is getting thinner.

Some additional symptoms I'm currently experiencing that I also worth mentioning:

- constant need to inhale some air even when resting

- occasional sweating when resting

- no cough, no wheezing when breathing normally, but I have this occasional urge to forcefully exhale the air from my lungs and I hear some rattling sounds

- wheezing sounds when I move my chest sideways, especially with the open mouth

- ocassional sore throat 

Additional info: my last spirometry/stress test was done in September and my pulmonologist said that I just need to sleep better, then prescribed me some sleeping pills...

Thank you so much for bearing with me here and taking time to read this. I really hope to hear some insightful comments and of course feel free to share your stories, maybe we can help each other on our tough journeys.   

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7 Replies

  • Posted

    iam no doctor but i would ask for ct scan lung and brain plus look at mri scan hope you the best
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    • Posted

      Thanks Mark! I was denied to get a CT scan by my GP twice before, apparently due to lack of evidence that I need one... I finally booked one in Sep and then never heard back from them. Going to push them harder first thing after NY. Also, I did brain mri before, it was clear.

      Cheers!

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  • Posted

    You need a good diagnostician, and the CT scan of the lung is a good idea. Might also try a rheumatologist.

    I hate to state the obvious but ALL of us feel the need to inhale ALL the time, including when lying down resting or even asleep. Without that constant need, we're dead.

    Did you ever work as a fireman?

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    • Posted

      I worked with wood (flooring) for a few years back in my 20s, lots of dust. I suspect that could contribute to my shortness of breath. Were you in a similar industry yourself? Do you have some lung condition?

      Hope to get a CT scan soon, I think that should shed some light on the problem. I still can't believe none of the family doctors I dealt with ever suggested to run one. I live in Canada, our free healthcare can be a real struggle here.

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    • Posted

      I'll take the Canadian healthcare over our no-healthcare in the States, any day. Of course I have lung disease. Anyone who hangs out in forums such as this without having the particular issue (or being family if someone with it) is seriously perverted, and we do get some of them.

      No matter the health system, doctors recommend tests based upon what they see in front of them. If they perceive that your breathing is normal on that day for someone your age, they're not apt to order an expensive test. I learned a hard lesson in that in the process of losing my hearing, which I lost because I was given IV antibiotics which were already known to kill hearing tho no one told me that for about 9 years. (Yes, I would've refused the medicine, which didn't cure my lung infection anyway)

      I immediately began experiencing both pain and loss of hearing. I did not know that before I was given the medicine, I had possessed extraordinary hearing. So when doctors tested me afterward, my hearing looked "normal." Well, it looked "normal" until suddenly it looked less than nirmal.

      All of medicine is based upon averages, including spirometry. The readings & interpretation of the PFT state your percentages relative to people of your age. It says nothing about how you breathed 3 or 4 years ago.

      I don't know what to say about those noises. I had all of them for several years until suddenly I was told that I had another lung condition in addition to COPD. You're not showing other signs of that lung disease.

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  • Posted

    Hi Mindhunter!  So sorry you are having such a struggle!.  Please INSIST on a CT scan.  If your doctor won't prescribe one, keep looking for a doctor that will!  I was misdiagnosed with asthma many years ago and those years were wasted as far as beneficial treatment goes.  FINALLY a doctor realized there was more going on and set up a CT scan.  That is how I was diagnosed with COPD.  Please keep in touch on this forum and let us know what happens.  A CT scan will definitely either show COPD or not.

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  • Posted

    Don't panic. Breathlessness leads to panic attacks which worsen the symptoms. COPD sufferers with dyspnoea (breathlessness) suffer from ten times the number of panic attacks. The breathlessness is generally from retaining too much CO2 rather than insufficient oxygen. I had severe breathlessness a year ago due to Stage 3 COPD (emphysema and bronchitis) and my blood pH showed I was slightly acidic which us a sign of excessive CO2. I started noting my breathing patterns and found I was breathing more rapidly than normal but not as deep as I could. The shallow rapid breathing was making the build up of CO2 worse. I started doing the recommended 'pursed lips' breathing as well as lots of deep breathing to try to expel the excess CO2. After a couple of months my phosphate dropped and I became hypophospatemic so had my blood pH tested again and it was too alkaline. I had expelled too much CO2! I had to try to change my breathing pattern again. I noticed I was breathing fairly rapidly, then found there is a correlation between breathing rate and illness. The more ill someone is, over a range of conditions, the more rapid their breathing becomes. The time between the out breath and next in breath shortens. I continued deep breathing but taught myself to re-lengthen the gap between breaths. I also stopped open mouth breathing as that lowers your nitric oxide levels, which is dependant on a biochemical reaction in your nose. My phosphate and blood pH returned to normal, and now I only get occasional periods of breathlessness that I manage to 'breath through'. My GP had not seen a COPD patient breath themselves from respiratory acidosis into respiratory alkaloids and it generally only happens with COPD sufferers who are put on assisted ventilation, but it is possible. Look at your current breathing pattern. Are you rapidly breathing in through your mouth when feeling breathless? How soon after an out breath do you need to breath back in? Whatever your underlying pulmonary condition is your symptoms will worsen unless you manage to adjust your breathing depth and rate to compensate. As this is normally under the automic control of your brain stem it can be difficult to gain conscious control, but it is possible. You need to practice your 'new' breathing style until it becomes habitualised. The two ways we maintain body pH is through retention/expulsion of CO2 and through bicarbonate produced by the liver. The carbon dioxide turns to carbonic acid that increases blood acidity, and the bicarbonate increases alkalinity. The CO2 levels are the quickest way our bodies adjust blood pH, and retains more when our bodies are too alkaline and expels more when our blood is too acidic through subconsciously altering our breathing patterns. Have a blood pH test done to see if the breathlessness is from excessive CO2 retention (would be acidic), and if it is then try to adjust you breathing pattern accordingly. It won't fix the underlying pulmonary problem but will stop the constant breathlessness.

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