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New Member, concerned about diagnosis and symptoms

Hi all,

I am recently (2 months) diagnosed with asthma, based on spirometry testing but I have never had an attack per se. I have shortness of breath on exertion.  I am physically fit and active (gym, hiking, etc.) but I feel like crap a lot of the time.  I am just looking for information because to be honest I am confused by what has been happening.

I should mention I am over 60, a non-smoker, have had allergy testing a few years ago (actually for penicillin but they did other tests as part of it, no apparent obvious allergies.)

So, I come to this forum for advice about getting a handle on all this. 

 

thanks in advance!

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  • K8sMom2002

    Hi, and welcome @LG2017! Hugs on the diagnosis. 

    When you say you haven't had attacks, I'm wondering … what do you think an asthma attack is?

    I always thought an asthma attack was like what I saw on TV — wheezing and puffing and constantly using an inhaler. 

    My asthma is not like that. I don't have a wheeze you can hear unless I am very, very sick.

    What I called 'coughing spells' and 'can't get my breath' and 'hold-on-a-minute-until-I-can-talk'  and "can't run because I'm coughing" … I had those for years, until I stumbled into a doctor's office in mid-attack because it just wouldn't pass. 

    "Asthma attack," he said.

    "But I'm not wheezing," I said.

    He pressed the palms of his hands on either side of my rib cage and said, "Try breathing out now." I whistled like a tea kettle. He could hear the wheezing with his stethoscope. 

    Asthma CAN be managed. Even if you don't have allergic asthma, you may still have that you can identify and avoid. We're here for you as you work through this, and we'll be glad to support you and encourage you!

  • Melanie Carver

    Hi @LG2017, welcome to our asthma support community.

    A few years ago I was chatting with one of AAFA's medical advisors and he explained to me why he doesn't like the phrase, "asthma attack". He said it makes people think that asthma is just that point in time when you are in clear distress; but that asthma is actually a lot more than that – you can have symptoms for days leading up to an acute "attack". So he prefers "asthma episode".  Because you may have a time period where your asthma is not under control. It may include a severe "attack"; or it may just be a combination of asthma symptoms that last for days.

    include:

    • Coughing
    • Wheezing (a whistling, squeaky sound when you breathe)
    • Shortness of breath
    • Rapid breathing
    • Chest tightness

    But you can also experience: fatigue, trouble sleeping, poor tolerance for exercise, etc.

    Do you have an asthma action plan?  

    The goal is to get your asthma under control so that you can do your daily activities, and sleep at night without interference from asthma.

  • LG2017

    I am already so glad I found this forum!

    I definitely have associated the idea of asthma with "attack".  As opposed to "hold on a minute while I catch my breath". 

    So far: no real issues sleeping, once I am warmed up I can manage quite a bit of exercise (and keep going with it) but the thing I am aware of besides the SOB on exertion is that just sitting around, some of the time, I feel like the inside of my torso just feels -weird- (if that makes any sense.)

    On my first pulmonologist visit, the nurse practitioner (who I felt was more clicked in to me than the doctor) said, try an inhaler, but it might not make a difference for you.  I have a ProAir, and I use a little AsthmaMD spirometer, but my peak flow number never really changes by much regardless of what I'm doing or how I'm feeling.  I've had the inhaler since May and haven't used it very much.

    I will check out the action plan and thanks again!

    laurie

  • K8sMom2002

    Ah, I know that feeling well!

    Probably the first real symptoms of asthma that I had were when I exercised. Like you, I have something called EIB — . And you are SO right — properly warming up prior to exercise is a good strategy! 

    Depending on the exercise and the temperature and humidity, my doctor also has me to pre-treat before exercise. 

    Could you write down your symptoms as they occur and then circle back to your doctor or NP and talk through your journal or symptom diary to help figure out a good working asthma action plan for you? 

    Also, I was one to put off using my inhaler until my doctor talked to me about how the medicine gets from the inhaler into my lungs. My lungs have to move that medicine down into them. The longer I wait to use my inhaler, the less air I have moving from the top of my lungs down into the bottoms of my lungs. So for me, my doctor advises me to use the inhaler sooner. I've found that it works better to do it her way. (duh! She is the one with the medical degree! ) 

  • Kathy P

    Hi and Welcome laurie! I don't have the "as seen on TV" type asthma attacks either. Most of the time, I cough – it's this tight, dry, cough and it's exhausting. Other times, my chest will feel heavy or tight – like I just can't quite take a full breath. And my peak flow readings rarely dip even when I feel pretty bad and want the elephant off my chest!

    I didn't realize that all of those things were asthma and that my asthma was not as well controlled as I thought it was until recently when I started biking. Yeah….some days I'd wind up feeling like I had a knife in my chest  Or I'd wind up panting and getting to where I couldn't exhale completely.

    I've been working with my doctor to find a more effective treatment plan – and seem to be doing pretty well at the moment. I did have a flare recently, but other than that, I have been able to cycle how I want. But every single day I have to figure out how I'm feeling and adjust to my treatment plan on what meds I take. I've learned a lot about living with asthma – it's different every single day!

  • Pljohns

    Welcome Laurie!  You will find a WONDERFUL group of people here with all sorts of experiences, advise, suggestions and we welcome new members to jump right in.  The suggestion already to keep a "journal" of sorts and then circle back around with your provider is an excellent one.  I have an app-a lot of us do-that we use to track symptoms, peak flow numbers and stuff like that.  It provides a way of looking back and things and seeing patterns you might have missed.  Plain old paper and pencil works great too-I did that for the first few years.  I'm a bit different than some, my numbers tank SERIOUSLY with weather changes or any asthma type issue-it nothing for them to drop 50 points a day and me still feel OK-it's just a weather front moving in.  I don't have the "TV asthma" either and until recently had never really gotten him with the I can't breathe-mine had been a buildup of symptoms-shortness of breathe, heavy chest,cough-that type of thing.  I-like you-am not allergic to anything so it makes staying away from triggers super hard when you have no idea what they are.  Over the last 6 years-as long as I've had asthma-we've only figured out 3-4 things that will set me off-the weather being one.  I was 47 when I was diagnosed-and had never had problems as a child at all and not until that time, so adult onset is definitely me.

    Feel free to ask questions and jump in with comments, suggestions and anything else-we're all here for each other.  If nothing else, you will find the BEST support group here-no matter what, we're all here for each other.  Welcome!

  • Megan Roberts

    Hi @LG2017!  You've found the right place for support!  I also have EIB and am a fitness freak that trains for performance (I'm a paddler, sprint and distance, both really bad choices with asthma).  This last year has been my hardest year EVER managing asthma.  Before that I could always just use an inhaler before exercise and was fine unless it was high humidity or something.  But last fall I got two respiratory infections, and after that my asthma became unmanageable.  I persisted exercising and frequently just had to stop, because I couldn't get any oxygen.  Sometimes my chest was sore for days afterwards and I felt like I'd been hit by a bus and was really exhausted.  Humidity, cold weather, really high exertion levels– all made my airways close.  I started to piece together what didn't work for me.  @Pljohns and @K8sMom2002's suggestions of a journal or symptom tracker app is a great one and I probably would've made my life easier sooner had I tried it.  I found that a good solid 10-20 mins of warmup helped as well. It took a few trips to different doctors and persistence to get the right meds to manage my symptoms– I have finally, in the past few weeks, just gotten things under control!! I just added a new med that has really made a difference and has me feeling like my old self. The point of this is, keep working on figuring out what works/doesn't work for you so you can continue to enjoy exercising and whatever else makes you happy — you don't need to put up with shortness of breath and fatigue.  There are a lot of strategies for avoiding environmental causes (if you're susceptible) and a lot of different meds that can help.  Keep working at it until you find the right ones, your health and happiness are worth it!

    Wishing you the best– let us know how it goes!

  • RedCoog

    LG2017,

    i feel your pain! I'm also very new to this ordeal, and I don't believe I fit the stereotype of typical asthma. Just by some of the comments and testimonies of folks it sounds like there are tons of variations of this disease. 

    This board is awesome, full of knowledge and encouragement! I am also glad to have come across it!

    good luck and I hope you figure out how to manages your condition!

     

  • LG2017

    First, thanks! (why isn't there a Heart emoticon?)  Everything/everyone here so far is so helpful & I know I will learn more as I go along.

    I am using the AsthmaMD app on my phone (got it with the spirometer) and have been tracking, but moreso for the peak flow numbers and not as much for the symptoms as other than SOB (and chest tightness) the other ones don't apply, and "chest feels weird" is not one of the options.  Anyone else have a tracker app they like and would recommend?

    A side effect of being here is that the feedback so far is increasing my confidence in my doctor (himself an asthmatic since childhood.)  I think I just wasn't willing to listen to him because of my strong denial about this diagnosis (based on misperception as well as a misplaced sense of immortality more appropriate to a teenager than a "senior".)

    Now off to the gym for Zumba!

    laurie

     

  • Melanie Carver
    LG2017 posted:

    First, thanks! (why isn't there a Heart emoticon?) 

     

    Complete oversight! Got it added in there now:     

    LG2017 posted:

    A side effect of being here is that the feedback so far is increasing my confidence in my doctor (himself an asthmatic since childhood.)  I think I just wasn't willing to listen to him because of my strong denial about this diagnosis (based on misperception as well as a misplaced sense of immortality more appropriate to a teenager than a "senior".)

    There is a grieving process to being diagnosed with a chronic condition like asthma. It's normal to have denial. Now that you know that "chest feels weird" is how your asthma feels to you, it will help you as you are tracking symptoms and communicating with your doctor.

    I hope you enjoy zumba today!

  • Kathy P

    We've all been in denial at times! Learning what asthma feels like for you and that it's different from what others might feel is key. I know I've learned a lot about some symptoms I never really paid much attention to. I need to monitor those and apply my treatment plan sooner rather than later so those "minor" things don't turn into bigger issues!

  • Megan Roberts

    I can so relate to that "misplaced sense of immortality." Because of it I don't address things until they are WAY past when they need to be attended to.  In hindsight I wish I was so much more proactive about treatment as soon as I had symptoms.  I also felt totally empowered by the info I found here and other people's experiences to really take action for myself.  Until AAFA I honestly just thought my symptoms were my new permanent reality!  

    Also– it's so great you have a doctor that gets the disease personally and who you are finding more and more confidence in.  That will be a huge asset in finding the right treatment for you.  

    Keep enjoying that Zumba

  • Pljohns

    megan-I still tend to wait to do anything until its WAY past the point it should have been addressed-that's why I landed in the hospital 3 times in less than 6 months.  By the time I started throwing more meds at it and finally prednisone, it was way too far gone to turn around without IV steroids.  You would think i would have learned my less, but i still tend to be hard headed about it and just don't slow down long enough to do what I know I'm supposed to do.  I wish I knew why I was that way, but it is what it is.

  • LG2017

    For the record, Zumba was great. I didn't pre-treat (which I have been doing before workouts) just to see what would happen and as far as I can tell, it was fine without the extra bump of energy.  Admittedly I am one of the people in class who take the easier version of some of the steps (no jumping jacks for me, thanks.) 

    Based on what I've read so far today I am paying closer attention.  Already I see that indoors w/AC is easier than outdoors with heat.  Well, stating the obvious.  Going to keep trying to look for subtle changes as the days go by.

    Oh, and to all:

  • K8sMom2002

    Lots of good replies here! The support here at AAFA is wonderful, and it's especially wonderful because while we may all use slightly different ways to describe what our asthma is like, it all comes down to, "How do we do what we want to do without asthma limiting our daily lives?" Some days that's not possible, but with some care, I've had more good days than bad, and I owe that to AAFA and my fantastic doc.

    One thing that AAFA has helped me learn is that those small, minor symptoms I was trying to power through? They're useful red flags for me to step back, assess and figure out what is going on. 

    Yay for zumba, Laurie!

    And Lynn, you've been an inspiration to me to NOT ignore those little red flags. I read your posts and comments, and I see a person who is committed about taking positive actions to help your asthma, not just for your family but because YOU know you are worth it all by yourself.

    Rome wasn't built in a day, and we all are less than ideal on some days, but … (to round out my bumper stick sermon here ), it's never too late to become the person I want to be.

  • green881

    >>He pressed the palms of his hands on either side of my rib cage and said, "Try breathing out now." I whistled like a tea kettle. He could hear the wheezing with his stethoscope. 

    I've had asthma for 40 years, never heard or seen that one!  I'm going to look it up.  Useful because so often I know something is going on but maybe I'm not wheezing audibly.  When it gets worse people can hear me wheeze without stethascope but doctors don't always believe you.

    Once caution that you probably heard already:  It is rare for people to have first diagnosis of asthma over age 20.  Statistics I read were maybe like 8% (anyone know a reliable number on that?) Asthma is not that easy to diagnose sometimes because the symptoms overlap many other conditions.  Doesn't mean though that the treatment is incorrect, sometimes if you respond well to the treatment that confirms the diagnosis.

    If you continue to have atypical symptoms and the treatment efficacy is hit and miss I would dig deeper if I were in your shoes.  But I do like your doc!

     

  • Jen

    LG2017 – Welcome. I hope that the information others has shared has been helpful.  A new diagnosis can be hard, but you will eventually find your new normal.  Yay for Zumba going well.  I go to the gym 3x a week and usually do Zumba on Mondays.  I, too, have to go low impact sometimes – usually it's my hip, this week it was a sore toe (cut it a couple weeks ago when we were camping and it got infected).  Still…it's a good workout and a good stress reliever.

    green881 – Welcome to you, too.