Having Hard Time to Breath CFIDS

Discussion in 'Fibromyalgia Main Forum' started by gosmoothy, Aug 3, 2006.

  1. gosmoothy

    gosmoothy New Member


    I hope everyone is well.

    My doctor told me that I have CFIDS about three years ago, well a year later I started having shortness of breath problem.

    Its been almost three years since the problem, and I am having shortness of breath and fatigue, as well 100 other symptomes.

    I paid my visit to Pulmonologist and he performed a Chest-Xray and Lung Breath test - blowing test.

    The results were great, no problem or anything.

    He told me to go see an other doctoro becuase he has no idea.

    I have no fear, I can sleep at night well, no other problems or anything.

    No chilis or anything.

    Just shortness of breath.

    What do you guys think it may be ?

  2. kholmes

    kholmes New Member

    Welcome to the site; looks like you're a newbie.

    Same problem here: shortness of breath and a kind of tightness in my chest upon exertion (walking more than about thirty feet, or standing for more than about five minutes, in my case).

    They also ruled out asthma and lung problems for me.

    Have you had your heart checked out--with an EKG or stress test? That's well worth doing, since heart problems can cause shortness of breath. My EKG showed my heart was fine, but I haven't had a stress test done.

    Some doctors and researchers theorize that CFS can affect our whole neurological systems, which can result in shortness of breath. The Canadian definition of ME/CFS lists breathing problems as one of the myriad of symptoms of CFS. I have orthostatic hypotension, too, which can cause breathing problems.

    I don't know what they can DO about it, exactly, but magnesium and not overexerting has helped me a bit.

    Try doing a search on "breathing problems" or "shortness of breath." There are quite a few posts about this, from people with CFS and those with Fibro.

    Good luck--and don't worry.


    [This Message was Edited on 08/03/2006]
  3. barbinindiana

    barbinindiana New Member

    Do a search on orthostatic intolerance. And dysautononmia. And autononmic nervous system dysfunction. If you have CFS you probably have this problem too. I took me 6 years with CFS too learn about this.

  4. kholmes

    kholmes New Member

    I may have asked you this before (a bit forgetful today), but has your breathing improved at all? What are you taking right now for it?

  5. barbinindiana

    barbinindiana New Member

    No I haven't had any improvement. I've just started going to the doctor again after 2 years of giving up on doctors, and not having enough money to go to doctors.

    I got so tried of not getting any help, and my money was getting so tight.

    So now I'm going again, but my doctor just doesn't seem to know what to do for me. I sure wish I could find a good doctor.

    They know I have this condition, because after I went to doc and asked for a tilt table test, she sent me to the hospital for the test and I passed out on the table.

    Diagnosed with neurocardiogenic syncope which is just one form of orthostatic intolerance.

    I even was going to a heart doctor, but got no help there either.

  6. gosmoothy

    gosmoothy New Member


    thanks for all the support.

    Yes, I did visit a heart specialist about a year ago and he did an entire heart test and that was normal. Also he did a treadmil (sp) test with everything hooked up to me.

    Everything seemed normal to the doctor.

    I dont really understand how my CFIDS was form, and how it can cost so many sypmtomes.

    I am angery, and I have no idea what to do, becuase i am a very young guy.

    I am only 23 years old and I have all this problem.

    do you guys think that by having CFIDS, your antibodies may become delay to other infections ?

    All the support helps.

    p.s. I also get headaches with the shortness of breath.
  7. barbinindiana

    barbinindiana New Member

    My treadmill test and breath test came out ok too. In fact The person who gave my my breathing test said I was 100%. Very good. You would think that someone who was getting breathless all the time wouldn't do well on the breathing test wouldn't you?

    When it comes to orthostatic in tolerance, it has nothing to do with your lung capacity.

    You need to ask for a holter monitor test and a tilt table test.

    [This Message was Edited on 08/04/2006]
    [This Message was Edited on 08/04/2006]
  8. gosmoothy

    gosmoothy New Member

    If I continue my life with shortness with breth, already told my doctors and they keep telling me I am oky..for last 1 year or so..

    If I continue my life with shrotness of breath and 100 other symptomes....Where can all this go in 10 years, from now ?

    Everything seems fine, but I have a bad feeling about the outcome..with CFIDS and shortness of breath and all that stuff.

  9. KMD90603

    KMD90603 New Member

    Hi Raj. I also have CFIDS and I, too, experience shortness of breath. However, with mine I notice it's definitely related to how bad the rest of my symptoms are. On the days when the fatigue and weakness is real bad, that's when the shortness of breath is the worst. It's almost like it takes too much energy to breathe at some points. And sometimes, and this sounds stupid, I even forget to breathe. I'll be laying down or sitting here at the computer, and I'll find myself unintentionally holding my breath. It's the weirdest thing.

    Gentle hugs,
  10. kholmes

    kholmes New Member

    Try not to be fearful about your future.

    (It's easier for me to say this than to do it; I'm a 40 year old male, and I'm disabled with severe CFS).

    The breathing difficulties are scary, but they also tell me when I'm overdoing.

    It's weird; "shortness of breath" doesn't really describe it. Nor is it bronchial/asthmatic feeling. It just feels like my lungs are constricted and are not circulating enough air.

    One thing that encouraged me recently was to find out that the high school kid in the documentary about CFIDS, I REMEMBER ME, has gone into remission and is living a functional life. He was so severely disabled with CFIDS that he was completely bedridden and could not feed himself or even turn over. He is walking again--though with a walker--and just recently, he took a trip to Wisconsin.

    Let us know if you find out more about your breathing problems, and if you find anything that helps alleviate them.

    [This Message was Edited on 08/09/2006]
  11. kholmes

    kholmes New Member

    I'm sorry to hear your breathing problems haven't improved. Let's keep posting and researching to see if there is anything that can help us with this problem!

  12. gosmoothy

    gosmoothy New Member

    Thank you, everyone for all the effort and support I am getting.

    I will keep everyong inform on how the symptomes are and what doctors have to say.

    Thank you
  13. MsE

    MsE New Member

    I agree with KHolmes comment: "Some doctors and researchers theorize that CFS can affect our whole neurological systems, which can result in shortness of breath."

    Shortness of breath has been one of my problems ever since I got this DD. I think part of the problem is that I can't exercise very much and so naturally my lung capacity isn't as good as it used to be. However, on top of that, I do believe CFS affects everything.
  14. gosmoothy

    gosmoothy New Member

    I am seen a Pulmonologist (sp?) tomorrow, and we will see what happens.

    I was curious as to, does anyone feel like thightness int he chest as well with shortness of breath and feel dizzy ?

  15. gosmoothy

    gosmoothy New Member

    the doctor,

    says I may have Dysemya (sp?) something like that, that the chest is okay and lungs is okay but the brain thinks there is something wrong and thats why, its sending out wrong signal.

    And the best way to fix this is, not nowing about it and thinking that everything is fine.

    Is this a good solution ?

    All Breath Test, and everything was done to ensure that no disease or anything was there.

    She mentions that my vital signs go up and down alot, like my heart beats quick sometimes.

    Can CFIDS cause that ?

    Shoul I see a heart doctor?

  16. roadkill

    roadkill New Member

    I have the same sensations and breath-holding as kmd90603. Can't explain it but my family is always telling me to "breath". When I am tired it is especially prevalent.
    It feels like I can't inflate my lungs fully.
  17. barbinindiana

    barbinindiana New Member

    My heart does the same thing. For the last couple of years now I even get palpatations, but I didn't have them the first few years of this DD.

    Ours hearts start acting up because the blood is pooling and not get to the heart well.

    It's also not getting to the lungs well either. That's why we get the shortness of breath.

    It's also not getting to the brain well. Have you noticed that you are not able to think as well when you've been standing for awhile?

    This is an autonomic nervous systems dysfuction (ANS). Something happens to our autonomic nervous systems when we become sick. This dysfunction is also the reason for alot of the other symptoms of CFS.

    ANS is a part of chronic fatigue syndrome.

    Your doctor really should order a tilt table test for you. I had to tell my doctor I wanted this test. You most liKely have an orthostatic intolerance problem and it's cause by ANS. The tilt table test will make this dysfunction visable to the doctors.


    [This Message was Edited on 08/21/2006]
  18. gosmoothy

    gosmoothy New Member

    I am only 23 years old.

    Why am i having so much problem ?

    Why did CFIDS form in me ?

  19. kellygirl

    kellygirl Member

    I was "deconditioned", meaning I needed more exercise. But, it seems worse early in the morning when my blood pressure is still low.

    Working in home-health, I get tired of the clients remarking how "out of breath" I am when I am working.

    I hate that feeling of fatigue and feeling out of breath.

    It is part of the CFS.
  20. kholmes

    kholmes New Member

    Dysautonomia? Is that the word your doctor used? It's basically the same thing as BarbinIndiana is talking about (Autonomic nervous system dysfunction). For some reason, CFS affects our autonomic nervous systems.

    Try a Google search on Dr. Peter Rowe at Johns Hopkins University. He has done a lot of research on these problems, especially orthostatic hypotension, in young people with CFS. I even called him once, and he spoke with me for about twenty minutes.

    I don't fully understand why this happens, but it seems our brains aren't communicating with our hearts properly, causing a decrease in blood volume and this shortness of breath.

    The breathing problem is probably my most frustrating symptom, since it keeps me from walking and standing up more. I had a doctor say I am merely deconditioned, but I know it's more than that.

    I'm really sorry you're going through this, Raj, and I can definitely relate to all of your questions. I wish I knew why we have CFS in the first place! Let's just take one day at a time and try not to worry. Since you are young and haven't had CFS for all that long, there's a very good chance that with rest and over time, your condition will improve and you will go into remission. When this happens, don't overdo, whatever you do. Listen to your body.

    And keep us posted! By the way, are you from outside of the U.S.? Is Raj an Indian (Asian Indian) name? I live in New Mexico, in the southwest US.


    [This Message was Edited on 08/22/2006]

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