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    Default Breathing issues

    Hi all! In Dec I started having trouble with my heart beating hard. That lasted for a few days when I started getting out of breath. I would get out of breath doing anything that involved me walking or even cooking dinner, (no coughing, wheezing, or tight feeling). I am a generally healthy 27 year old, my lupus has been okay since starting plaquenil over a year ago. Finally went to the er. An ekg and blood tests were done, which were all fine, no blood clot or anything. Went to the doc and my peak flow was 230(normal is 480 for my age). I was put on 20mg prednisone and seen a week later, with peak flow better around 350 but not normal . Anyways just went today for pulmonary function tests. Inhalers don't help,we don't think its asthma. I have a big history of the pleurisy like sharp pains in my chest. I have read a bit about it and the only issue that seems to match is the shrinking lung syndrome, but that is pretty rare. The pulmonologist will interpret the pulmonary tests results and send them to my rheumy and pcp.
    Has anyone else experienced this?
    I will keep updating as I see doctors. I think I will ask for chest x ray and maybe ct scan to check for scarring. Thanks, Mary.

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    Good morning, Mystiejm!

    I am so sorry that you are going through all this! There is nothing worse than feeling like you are struggling just to take the next breath! I have asthma, and I have to watch my peak flow carefully so that it doesn't drop too low. Sometimes I am having an asthma episode and don't realize how bad it is until I check my peak flow, and then I have an "aha" moment and say, "no wonder I have been feeling so bad"! I think sometimes I adjust my breathing, or I am so used to coughing that I let it go until my airways are so restricted you can't hear the wheezing at all and it isn't until after a breathing treatment and the airways open up a little that you can hear it. But that's asthma and your doc will be able to sort that out for you.

    That being said, I also understand what you are describing because I have experienced this too. I have recurrent pleurisy and pneumonia and it took a while to sort it out because I do have asthma. Anyway, for me, in addition to the asthma, the shortness of breath, lowered peak flow, and poor pulmonary function has also been linked to weak chest wall muscles as a result of overlap syndromes within the Lupus umbrella (for me they are Myasthenia Gravis and Polymyositis). Remember that everyone is an individual and autoimmune diseases affect each person differently...so what was the case for me might be different for you.

    It is very good that you are seeing a pulmonologist because he will be able to detect, through the pulmonary function tests, the difference between asthma which is due to restricted airways, and weak chest wall muscles, which keep you from breathing properly and can lead to fluid buildup in the lungs and possibly pneumonia. There are exercises you can do to strengthen those muscles until whatever is causing the problem gets under control, and your respiratory therapist will help you with those.

    I do hope this helps. Try not to worry too much and I would avoid reading all the scary stuff on the internet. Sometimes I think we have too much information available to us. My rule of thumb is this: chances are that if it is rare, it probably doesn't apply to me.
    May today bring you joy, freedom from pain, and abundance of blessings!

    Kathie Lea

    “If the Lord be with us, we have no cause of fear. His eye is upon us, His arm over us, His ear open to our prayer--His grace sufficient, His promises unchangeable.”~John Newton (1725 - 1807)~


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    Thats good that the pulmonary function tests tells the doc whats going on. Its amazing the medical advantages we have today. The hardest part was not being able to play with my kiddos or clean. I am not seeing a pulmonologist and had to travel far to get the test done, but he will send the results to my doc. Im sorry you have so many symptoms : ( Its hard with autoimmune issues because I never know whats serious and whats not, and usually ignore it until I cant function.

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    When you have Lupus it seems like one day you are fine and the next day your body decides it doesn't like to breathe or walk or (fill in the blank). I am glad that you went to the docs. Please keep us update
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Sorry to hear you are struggling with your breathing,it can be very scarey. I have asthma and had a P.E and have just had my 3rd lot of pleurisy.My god it hurts so much.Glad to hear you went to the doctors and i hope the results turn out with good answers. My peak flow is very low and ive not had asthma attack for a while now.To be honest im scared that the pleurisy will come back again....i was screaming to every breath over christmas....fingers crossed it stays away.Let us know how you get on.
    love n hugs/xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Sorry to hear that you are having this problem. I hope that you can get answers and the appropriate treatment. I had a similar problem, still do at times, the first year I was really sick. I went to a Pulmonologist and even though inhalers really didn't help she said that I had asthma. My daughter has asthma - my problem is not asthma. I did what she suggested for a while to see if it would help, but it didn't and even when I told her it didn't she didn't listen. I haven't been back since. Now, I know I should probably find another doc, but my point is if you're not happy w/your doctor at some point - find a new one.
    Lauren

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