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Does anyone know statistics for PWC's and pulmonary function testing?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Gingergrrl, Jul 17, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I was curious if anyone on PR knows the statistics (if they even exist?) re: PWC's and pulmonary function testing?

    Is it common for PWC's to fail pulmonary testing (i.e. inhaling and exhaling into a spirometry machine, trying again with inhaler or med, lung diffusion testing, etc.)

    I am unclear if a person with ME/CFS would normally be able to complete and pass these tests vs. be too weak to complete them vs. fail them.

    Are there any studies on this topic? Am wondering if there is great variation in results vs. a trend that most pass or fail them? I am particularly interested in restrictive airway disease.

    Any info would be greatly appreciated! Thank you in advance to anyone who answers this.
     
  2. lansbergen

    lansbergen Senior Member

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    For me it is very clear lungs and plura are involved. When I was at my worst the lower lobs did not work and the upper lobs only barely worked.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @lansbergen did you have pulmonary testing or was this based on symptoms of daily/constant shortness of breathe or something else? Thank you!
     
  4. lansbergen

    lansbergen Senior Member

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    Clinical picture and I could follow the improvement. I could hardly breath and now I can inhale deep.

    It was not only the lungs and plura but also the upper airways. Everything is much better now.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    @lansbergen what did you do to regain your breathing? I am trying to figure out if I am an outlier b/c my breathing difficulties are so severe and need wheelchair to get from bed to bathroom and so frequently gasping for air, I just can't take much more of this!
     
  6. ahimsa

    ahimsa Senior Member

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    I don't know statistics for folks with ME/CFS. I can share that I did have a spirometry test in those first few years of illness. I had no problems. I passed with above average values.

    I have no obstructions in the my air flow and had no trouble blowing into the tube. Well, It probably would be some trouble - quite tiring! - if I had to do it over and over. But once for that test was fine. My guess is that I would still have no problems with such a test.

    When I do get short of breath (which was almost all the time in the beginning of my illness, when I had no idea what was triggering it, and had no diagnosis or treatments) it does not seem to be a problem with the volume of air in my lungs. There's no trouble getting air in/out of my lungs. It has something to do with my Dysautonomia/Orthostatic Intolerance - the low blood volume and low blood pressure, maybe?

    The short of breath feeling gets worse as part of my PEM. It feels like being constantly out of breath. It's like I just stopped running and I'm waiting for my heart and breathing to get back to normal. But they don't. Chest pain is often there at the same time.

    @Gingergrrl - I hope you get more information on this issue that helps you. I thought I'd post my own experience even though it seems different from your situation.

    PS. I remember reading my doctors' notes years later and seeing SOB all over the place. And I thought, wait, I wasn't crying, was I? It took a while before I realized SOB was an acronym for Short Of Breath. :rolleyes:
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @ahimsa and your experience seems to match what others have told me so far which is that they felt SOB from dysautonomia yet they could pass a spirometry test. Whereas I horrifically failed three spirometry tests since Sept and could only inhale/exhale at 69-70% of normal while at rest.

    I was supposed to exhale 6 seconds minimum but ideally ten secs, but two days ago I did 1.2, 1.6, and finally 2.0 secs but with a level of effort that I thought I was going to die and was severely ill that night and had to call doctor who was ready to send me to the ER for oxygen (but I did not go.)

    It is disheartening to me b/c I really believed that I could pass the test and do the lung diffusion test that my ME/CFS doc, my MCAS doc, and my mold doc all wanted me to do. I gave it everything in me but could not do the first parts of test so respiratory tech called off the diffusion test b/c she saw I was too impaired (even though she saw my persistence and determination.)

    If I am 70% of normal breathing at rest, I do not know what I am with exertion but my printout from hospital in May (the second time I attempted test and failed) said I have a restrictive airway disease and I am pretty sure my MCAS doc is going to give me the same diagnosis.

    The problem is that I do not know why I have it and if it is b/c my muscles are just so weakened from ME/CFS, or if it is from breathing in toxic mold for 2+ yrs or ten yrs of breathing in multiple toxins at work or really bad mast cell stuff in lungs or all of the above or none of the above.

    I feel like an outlier on this board yet I have IgM viral reactivation of EBV, HSV 1&2, VZV, and two enteroviruses (echo and coxsackie) and first anti viral did nothing and second I could not tolerate even at micro dose.

    I also get severe autonomic issues with tachy and low BP and OI and now the immune system chaos with severe MCAS that led to hospital and MCS where I cannot live in apt that most people could probably tolerate but my brain is so hypersensitive that I am limited by everything.

    But the worst issue that has declined rapidly for two yrs is my breathing and it makes me wonder about my ME diagnosis if most PWC's can pass spirometry tests (although I match with ME in so many ways and my ME doc is convinced I have it.)

    But why don't other PWC's fail spirometry tests? It seems like many can walk and get delayed PEM but I cannot walk at all. My legs can walk fine but my breathing cannot sustain more than a few footsteps.

    I am starting to lose hope and I have a wonderful support system in person and a group of friends from PR and God who sustains me but the breathing limitations are becoming too much to cope with and I wanted to post about it on the public board in case anyone has any ideas that I have missed.

    Thanks to anyone still reading!
     
  8. lansbergen

    lansbergen Senior Member

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    The immune modulator and trying to stay within my limits did the tric but it was very slow improvement.
     
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  9. lansbergen

    lansbergen Senior Member

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    Weak diafragme and intercostal muscles is part of the problem.
     
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  10. ahimsa

    ahimsa Senior Member

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    It could be that there are other quite severe ME patients, those who are bedbound, who could not pass a spirometry test either. Those folks can't come into the doctor's office for such tests. So much of what we "know" about ME is based on patients who are able to go to doctor appointments on a more regular basis.

    Just a thought.

    I hope you figure this out. It must be so hard to be so sick while still having so many questions and odd test results.

    Sending :hug: MORE HUGS :hug: to you.
     
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  11. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Years ago I barely failed a spirometry test. The person giving it was so surprised, since I looked healthy, that she had me do it again with the same results. She said I was at risk for adult onset asthma. I did not know what my other health problems were at that time.

    I have not developed asthma. Lately I have noticed that I sometimes am breathing more rapidly and more deeply than I would expect for my activity level. I do not feel short of breath. (Except that one time when it was really hot and humid and I got to breathing really hard and got dizzy and had to lay of the floor for an hour.)
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @lansbergen I apologize for asking this again but are you comfortable sharing which immune mod you take and how you found it and if it helped your breathing per se? I would be very grateful for any info!

    How did your doctors assess that? Is there a test which determines someone has weak diaphragm & muscles vs. Lung scarring or another cause? Also curious if you had any mold exposure?

    Thank you @ahimsa and it really is hard to be this sick with no definitive answers but endless potential theories. And I agree with you and everyone else who told me that severe ME pts probably not getting spirometry tests so no real stats or data. Just the few I have talked to have passed the tests and no one failed them as badly as I did.

    @Little Bluestem for me the test seemed to rule out asthma and prove a restrictive airway disease but I find out more on the 30th at my appt. Thanks for sharing your experience.
     
  13. lansbergen

    lansbergen Senior Member

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    Lewvamisole. I used it as a dewormer for animals. When the still mysterious infection was brought in I noticed it helped for that. When I was dying I started taking it myself. My mediccal trained contacts had warned me for years for the danger but when I had nothing to loose anymore I took the risk.

    Maybe you can find that info in MG information. I concidered MG but as it did not fit well enough for my liking I put that aside.

    Don't know. don't care. I still live in the same house I lived in before I fell ill.
     
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