Chest and upper back pain with bronchiectasis and pseudomonas

Posted by joann @joanng, Sep 2 9:15pm

My visit with my pulmonologist today was extremely frustrating. He informed me that my pain in my chest and upper back must be related to something else because lungs can not cause pain. He told me bronchiectasis only causes chest tightness and a cough. My pain is not in my head but It is difficult to accept it’s caused by another problem and not my lung disease and infection. Any input from personal experience would be appreciated. I’m very frustrated to think I have another ailment causing the pain.

Liked by migizii

@joanng I am sorry for your frustration. Chest pain and upper back pain could be caused by a GI issue or a skeletal issue. My suggestion would be to talk to your primary care physician and request a referral. Your pain is not in your head! Good luck. irene5

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Irene
Did you have back or chest pain with lung issues?
Maybe from coughing so much?
Joann

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@joanng My upper back pain and chest pain had two causes: kyphosis with disc deterioration and and ulcer. The kyphosis was determined with an X-ray and my bone doctor in Clarksvile ( where we lived briefly) discussed options with me which included killing a particular nerve. The ulcer was confirmed with an endoscopy in Connecticut. Medication has helped that. Coughing certainly will make your whole rib cage hurt! irene5

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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

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@joann… It is frustrating to have so much pain and be told it is not your lungs. I had chest pain running around my bra line and in my back and breast areas. After having many heart tests, it was still up in the air. My acupuncturist treated my nerves which were highly agitated and made me cough twice as much as was necessary to remove mucous. It worked. I only cough after nebulizing twice a day. I, too had gastric issues with a hernia and had fundiplication surgery. That helped, also.
Don't give up your search. I agree with irene5, start with your PCP and demand consults with specialists to rule out other issues.

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Coughing and physical inactivity were finally determined to be the underlying cause of my pain when I had MAC at its worst. I was coughing all day and irritated the muscles in my chest, back and diaphragm. As the cough subsided I was still fatigued and not moving much. This caused me to stiffen up and feel even more pain.
After completing antibiotic therapy, I had to seek treatment for the now-chronic pain, complicated by arthritis and the need to stop NSAIDS. I suggest consulting your primary doc for suggestions to stop this from becoming a long-term issue for you.
Sue

Liked by migizii

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@egayle187

@joann… It is frustrating to have so much pain and be told it is not your lungs. I had chest pain running around my bra line and in my back and breast areas. After having many heart tests, it was still up in the air. My acupuncturist treated my nerves which were highly agitated and made me cough twice as much as was necessary to remove mucous. It worked. I only cough after nebulizing twice a day. I, too had gastric issues with a hernia and had fundiplication surgery. That helped, also.
Don't give up your search. I agree with irene5, start with your PCP and demand consults with specialists to rule out other issues.

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Thank you, searching for a new pcp.

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@egayle187

@joann… It is frustrating to have so much pain and be told it is not your lungs. I had chest pain running around my bra line and in my back and breast areas. After having many heart tests, it was still up in the air. My acupuncturist treated my nerves which were highly agitated and made me cough twice as much as was necessary to remove mucous. It worked. I only cough after nebulizing twice a day. I, too had gastric issues with a hernia and had fundiplication surgery. That helped, also.
Don't give up your search. I agree with irene5, start with your PCP and demand consults with specialists to rule out other issues.

Jump to this post

Thank you I’m looking for a new pcp

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@baz10

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

Jump to this post

Thank you

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@migizii I told my pulmonologist the same thing at my appointment In May and he gave me the same answer. He suggested it could be irritation from the smart vest I wear for mucus loosening, but I really didn’t believe this. I am presently in a cycle of coughing more again and this seems to irritate my chest/rib cage, but the pain is not as bad as it was in May. Good luck in your search for a viable answer that fits your situation. Stay well😊

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@migizii

@migizii I told my pulmonologist the same thing at my appointment In May and he gave me the same answer. He suggested it could be irritation from the smart vest I wear for mucus loosening, but I really didn’t believe this. I am presently in a cycle of coughing more again and this seems to irritate my chest/rib cage, but the pain is not as bad as it was in May. Good luck in your search for a viable answer that fits your situation. Stay well😊

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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.

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@jillsart

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.

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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.

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@jillsart

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.

Jump to this post

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)?

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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?

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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

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