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.
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.
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.
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
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
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.
I too have breathing problems and heart palpitations. I have recurrent pneumonia and aortic insufficiency. Have a chest x-ray to ensure you do not have a mild case of pneumonia or bronchitis. I do not have the typical symptoms with my pneumonia. Meaning, I don't have a cough or sniffles. I usually get a headache, low grade temp and sometimes vomiting. I just spent three days in the hospital due to another bout of pneumonia.
I hope that your breathing does get better. Just remember we may not present with the typical symptoms of opportunistic infections so sometimes we are not taken seriously. Request a chest x-ray.
I have recently been diagnosed with lupus but I am beginning to have chest pains and lots of wheezing. I already have asthma but it would usually get bad only with allergies and the frequent bouts of pneumonia and bronchitis. Inhalers do seem to work for me and before my pregnancy I was on Advair but stopped about a year ago. Not sure if it's just my asthma returning after my pregnancy or if it's something lupus related. I had a chest xray in December that didn't show anything. Ahhh I am beginning to understand some of the frustration with lupus!
I would definitely ask for a chest xray at the very least. Especially since you have a history of pleurisy. Good luck and keep us posted!
That's so strange that you bring that up becase I too experience periods of finding it hard to catch my breath. What I find strange is that I'm a Zumba intructor & I can blow through a class easily but climbing up one flight of stairs (at home or at work) will get me winded. I don't have asthma, either. I agree with the others, make sure & get it checked considering your history! :-D
I just wanted to say that I am going through the very same issues. It happened last year in November-- an inability to catch my breath and a burning sensation in my chest. Took prednisone, antiobiotics. Nothing. Then it just went away by January. I would walk out to the parking lot and would be gasping.
This year it started up in November but hasn't gone away. It seems to be worse actually sitting or lying flat. I did all of the above. Tried steroid and albuterol inhalers. Nothing-- and it's getting worse. They took a chest x-ray-- didn't show anything. Had a stress test and echocardiogram since I had so many risk factors of heart disease. Nothing. I am getting so tired from trying to breathe that my ribcage and muscles are actually hurting now. I am taking large doses of Advil-- helps some, just to make it through the day. I come home from work and go straight to bed.
My general doc has said that it might be tietzes sydrome or costochondritis. My SED rates are good; however,my hand joint pain is through the roof! I have an emergency appt with my rheumy on Wednesday. I'll share any info that I have.