Chest and upper back pain with bronchiectasis and pseudomonas

Hi Joann, Lungs do hurt at times if you have asthma. A technician who does the breathing test at the hospital told me that and he has asthma! Also have you been checked for scoliosis? I have it and it can cause pain most anywhere in the spine. Physical Therapy might help, it did for me and when my sessions were over, I continue to do the exercises at home. Wishing you a good day--baz

Thank you for sharing your experience. Knowing others have the same pain makes me feel better because I know it’s from my lung issues unlike what my pulmonologist is telling me. Yes I send in sputum samples each month and they continue to come back positive for pseudomonas. I currently use inhaled gentamicin 28 days on then 28 days off and I’m currently taking an oral antibiotic as well. Nothing seems to get rid of it.

Joann your experience is similar to what many of us have been through. I can relate to you saying that two years ago you were functioning so much better.
I dealt with chronic coughing and excessive mucous for 4 years before I finally got some relief. I also have been told that I have mild bronchiectasis. I believe my bigger issue was chronic pseudomonas aeruginosa infections. I used multiple courses of oral antibiotics which would make me feel better for short periods of time. During my worst time I had pain in my chest and sometimes my back directly behind my lung.
It wasn’t until I did my own research and asked for inhaled Tobramycin that I finally got better. My cough and mucous have declined significantly. My most recent sputum sample was free of pseudomonas. I’m not sure it has been eradicated for good but I am so much better.
Have you submitted sputum samples? How many times?
I just want to repeat what you have heard from others. Educate yourself and be your own advocate. If you have the opportunity for a second opinion take advantage. Good luck and don’t lose hope.

Thank you Terri this does make sense. So my pulmonologist is basically saying the lungs aren’t causing the pain but fails to say all the other issues that go along with bronchiectasis and pseudomonas are making me cough non stop which in turn cause the pain. So he’s off the hook cause the lungs aren’t the direct cause of pain. I asked about this and he told me to go to my primary care for the pain issue. I feel like it’s passing the buck. I’m extremely frustrated. I go for another cat scan Thursday because I asked for it. I asked for it because lung specialist says you only have a very small area of Bronchiectasis which should not be causing you all this discomfort, pretty much discounting my symptoms and comparing me with someone that has a larger are of this in their lungs. I suggested maybe the area is no longer small and it’s expanded now -a year later. For such a “small” area I would think I could function a normal life style. I can’t even make it through an 8 hr day at work. Sorry I’m venting but I’m frustrated because I was working 70 hours a week 2 yrs ago and not had a problem doing it. I guess I’m off to see the PCP then the CT scan. Thank you for sharing I feel better knowing it’s not in my head and someone else did have this issue.
Thank you Joann

Joann, I found that yoga helped a great deal with body pain, especially the back pain. You can do yoga at home, it is easy. I found that 'the child's' pose helped a lot. That is where you sit on your knees and bend forward, reaching straight out ahead with your arms on the floor. This pose opens the vertebrae, and stretches your back and shoulder muscles. Rolling into a ball on your back (on the floor) and cause yourself to roll from side to side also helps. It is a form of self massage. Getting on all fours on the floor and then bend around to each side as if you were going to bite an imaginary tail also feels good. This also opens the vertebrae and exercises side muscles. Will you let me know if you try these and how it went?

Hi Joann, have you seen your suseptibility test for your pseudomonas? Ask for a hard copy if you do not have a portal in which to view it online. If there is no suseptibility test, ask your dr why there isn't. How can they know which antibiotics will work if that test is not performed?

@anunez, Your story sounds identical to mine, except that my cough went away entirely in 2016 after the tobramycin. Bear in mind, because we have bronchiectasis; we always have the chance of getting these various infections back again. That is why it is so important to do the saline treatments to keep your lungs clear. Do not give fodder to bacteria!

It took me 2 or 3 courses of targeted oral antibiotics, plus 28 days of inhaled Tobramycin, to beat down the pseudomonas. This was after almost a whole winter on an assortment of other antibiotics for "chronic bronchitis." After that I did an 18 month course of the "Big 3" antibiotics to beat down (but not completely eradicate) MAC. Now I am on 7% saline nebs, which I hope are keeping both from growing again.
Sue

My dr claims they tested for Mac and did susceptibility test but I have not see the results and the Mac test came back negative per my dr but I see in my portal it was not complete due to the Sample qty being too small. Don’t know what to believe . I did ask for another Mac test which will be done again with today’s Culture drop off. We will see. My cat scan came back with no significant change since March so that’s good news and dr says looks like infection is gone but I know it’s not based on how I feel and the color of the drip off I did today. But I took his word for it and asked if I should stop the antibiotics both inhaled and oral he said no. If infection is gone why not stop them ? I didn’t ask because I know it’s not gone. I guess not I just wait til the test results come back.