Chest and upper back pain with bronchiectasis and pseudomonas

I am looking for a new PCP also as mine won’t even give my anything for my bronchiectasis , let alone anything for pain, that stabbing in between my breasts that is so bad I can’t even inhale. I live in a very rural area, can’t drive with a rare genetic disease and the DHS here just took my Dual Eligibility I was awarded, both in November of 1995 from the Social Security Administration in Baltimore. Maryland , because the DHS said I could paint my toenails. I’ve about lost all hope in living 6 more months. Every day is such a struggle and it’s all wearing me down, down , down.

I’m sorry you are struggling with your conditions and situation. I understand the feeling of getting zero relief. I think once we find a PCP that will listen and understand things will start to move in the right direction. Until then it is up to us to care for ourselves. One thing I learned from this site is be your own advocate. Good luck to you.

Hi Jill. Please don't ever give up hope that you can feel good again. I have been in your shoes before, for many years. I had the burning pain between my breasts and it turned out to be silent acid reflux. I had the beginning of Barrett's Syndrome, which is a condition of your esophagus getting erroded by gastric acid coming up from the stomach. I also had what I called 'my rotten' spot on my back near my right shoulder blade. I believe I may have had a torn muscle there from yrs of chronic cough. Once my mac & pseudomonas infection got cleared out, these other maladies also went away. I know how near death this disease can make you feel. Girl, I got my Living Trust done and tied up all loose ends thinking that I wasn't going to live out the year. That was back in 2013. In 2016 I was pre-qualified for a lung transplant, which I ended up not needing (now anyway). I have diminished lung function. I am at 37% now and have shortness of breath, but my quality of life is so much better. I do pretty much anything I want to do (except snow skiing)! With diligence in self care; you can pull through this. As for your pain in your sternum, have you addressed that it may be due to acid reflux (GERD)?

Hi Joann. Your dr doesn't seem to be aware of what patients with lung issues go through physically. Throughout all of the years I suffered with my chronic lung issues; chest and back pain were a part of it. I had a 'rotten spot', the name I affectionately gave my one painful place on my back. It was near my right shoulder blade. I suspect that I may have torn the mucsle there from years of chronic coughing. I probably kept re-injuring that muscle every time I coughed. The same may be true of muscles in the chest. Acid reflux can cause chest pain as wel,l and often accompanies lung disease. Many members on this site have stated that they too have had chest and back pain accompanying their lung diseases. Think of it like this: if you take a yard of material and grab it in the middle and twist it; the whole yard of material is affected. The body is a lot like that yard of fabric, especially when it comes to connective tissue like muscles. Does that make sense to you?

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

Terri - "Think of it like this: if you take a yard of material and grab it in the middle and twist it; the whole yard of material is affected. The body is a lot like that yard of fabric, especially when it comes to connective tissue like muscles." What a great analogy! It's a lot like the PT has been telling me. He releases a knot or strain in one spot, and the next visit a new one has popped up elsewhere. Baby steps!

@joanng Hang in there Joann - as someone who was "on the couch" coughing and in pain two years ago, I can tell you I am back to "almost normal" and can do an 8 hour day - wrangling 2 young grandsons and an active dog. Terri & her encouragement helped me get there.
Sue

Sue I thank you for the positive feedback I hope I have the same experience as you. I’m too young to not get through an 8 hr day.

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 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.

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