Chest and upper back pain with bronchiectasis and pseudomonas

Posted by joann @joanng, Sep 2, 2020

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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@windwalker

Joann, keep me posted. Sending healing thoughts your way.

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Thank Terri

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@maysrx

Hi, my name is Maryann. I am fairly new to this site (this being my first post), as well as all things Bronchiectasis as I was just diagnosed last winter and am currently awaiting results for MAC, which my pulmonologist highly suspects, from bronchoscopy done 3 weeks ago. I too have experienced chest and back pain that my doctor actually attributes to my lungs... she even went through my CT scan with me and the connection was made that each area I was having pain correlated to an area in lung with inflammation. My doctor told me that the area surrounding the lung is rich with nerve endings and being that the location of the inflammation/Bronchiectasis is near the outer wall of lung and is why I am experiencing what I am. So while the lung itself may not produce pain, it can cause the nerves surrounding it to activate. I used to think it was my back, my bra, etc., but once I saw the CT and how the areas of pain matched exactly with the “spots” on the film it all made sense and is now one of the ways I/we evaluate my symptoms. Matter of fact, evidently the bronchoscopy stirred things up and instead of getting better I became worse, especially this last week, with shortness of breath, low 02 levels, chest sweats at night (anyone else get that?) and return of lung (chest and back) pain... In addition to daily/consistent nebulizing of saline and albuterol (which thanks to following discussions on this site, I now understand the importance of consistent use...my doctor probably told me but I was a bit overwhelmed when I first got the news and somehow thought it was as needed) I was also put on Azithromax and Prednisone 3 days ago and today I am starting to notice a decrease in the areas of “lung” pain. Still have a couple of more days of meds to go...hoping it’ll just keep getting better ..... then I only have to deal with the CA air quality 😱

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Hello Maryann. I am glad that you posted and joined our conversations. We learn so much from each other here. Have you had a chance to read over older posts yet? A member, @kateman has posted a treasure trove of good info. You can go to the magnifying glass icon at the top of this page and type in her @kateman name and pull up all that she has posted. We have our Discussion board list of topics that you can scroll through forever and pick up conversations that you may find helpful too. That is located on the opening page for this group. I see that you are now taking prednisone; that should help to make you feel better soon. It always did wonders for me. I hope that you are able to avoid the smoke there in Ca. that has to be miserable. Are you able to go someplace else to get away from the smoke?

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@maysrx

Hi, my name is Maryann. I am fairly new to this site (this being my first post), as well as all things Bronchiectasis as I was just diagnosed last winter and am currently awaiting results for MAC, which my pulmonologist highly suspects, from bronchoscopy done 3 weeks ago. I too have experienced chest and back pain that my doctor actually attributes to my lungs... she even went through my CT scan with me and the connection was made that each area I was having pain correlated to an area in lung with inflammation. My doctor told me that the area surrounding the lung is rich with nerve endings and being that the location of the inflammation/Bronchiectasis is near the outer wall of lung and is why I am experiencing what I am. So while the lung itself may not produce pain, it can cause the nerves surrounding it to activate. I used to think it was my back, my bra, etc., but once I saw the CT and how the areas of pain matched exactly with the “spots” on the film it all made sense and is now one of the ways I/we evaluate my symptoms. Matter of fact, evidently the bronchoscopy stirred things up and instead of getting better I became worse, especially this last week, with shortness of breath, low 02 levels, chest sweats at night (anyone else get that?) and return of lung (chest and back) pain... In addition to daily/consistent nebulizing of saline and albuterol (which thanks to following discussions on this site, I now understand the importance of consistent use...my doctor probably told me but I was a bit overwhelmed when I first got the news and somehow thought it was as needed) I was also put on Azithromax and Prednisone 3 days ago and today I am starting to notice a decrease in the areas of “lung” pain. Still have a couple of more days of meds to go...hoping it’ll just keep getting better ..... then I only have to deal with the CA air quality 😱

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Hello Maryann - I will add my welcome - to our wonderful, helpful & supportive group. Feel free to ask questions any time - we have members like Terri, who have been on this journey for many years, as well as folks who have a new diagnosis. We learn from each other, while we are not doctors, we are often able to tell you what has worked or not for each of us.
To answer a few of your questions, yes, I had night sweats with MAC when it was severe, as well as pain, shortness of breath & fatigue. All improved over time once I was correctly diagnosed & on antibiotics.
If you read through past posts, you will see one of the things that is a hallmark of MAC - it is "slow to grow and slow to go" - you may have had it for a long time and only noticed symptoms as it got worse. By the same token, because it is slow-growing, antibiotic therapy is long-term to knock it out, and involves multiple antibiotics at the same time. There are (manageable) side effects and you can get a lot of support here.
Let us know what you learn and how you are progressing.
Sue

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@maysrx

Hi, my name is Maryann. I am fairly new to this site (this being my first post), as well as all things Bronchiectasis as I was just diagnosed last winter and am currently awaiting results for MAC, which my pulmonologist highly suspects, from bronchoscopy done 3 weeks ago. I too have experienced chest and back pain that my doctor actually attributes to my lungs... she even went through my CT scan with me and the connection was made that each area I was having pain correlated to an area in lung with inflammation. My doctor told me that the area surrounding the lung is rich with nerve endings and being that the location of the inflammation/Bronchiectasis is near the outer wall of lung and is why I am experiencing what I am. So while the lung itself may not produce pain, it can cause the nerves surrounding it to activate. I used to think it was my back, my bra, etc., but once I saw the CT and how the areas of pain matched exactly with the “spots” on the film it all made sense and is now one of the ways I/we evaluate my symptoms. Matter of fact, evidently the bronchoscopy stirred things up and instead of getting better I became worse, especially this last week, with shortness of breath, low 02 levels, chest sweats at night (anyone else get that?) and return of lung (chest and back) pain... In addition to daily/consistent nebulizing of saline and albuterol (which thanks to following discussions on this site, I now understand the importance of consistent use...my doctor probably told me but I was a bit overwhelmed when I first got the news and somehow thought it was as needed) I was also put on Azithromax and Prednisone 3 days ago and today I am starting to notice a decrease in the areas of “lung” pain. Still have a couple of more days of meds to go...hoping it’ll just keep getting better ..... then I only have to deal with the CA air quality 😱

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I hope your tests are negative but your doctor sounds compassionate. You mentioned “chest sweats” at night. As I consider myself cold blooded-all day long I wear more clothes than anyone else I see or live with, many nights I wake up feeling like I could fry an egg on my body, but with no sweat. I find this very strange. Does anyone experience this kind of experience as well as your chest sweats?

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@windwalker

Hello Maryann. I am glad that you posted and joined our conversations. We learn so much from each other here. Have you had a chance to read over older posts yet? A member, @kateman has posted a treasure trove of good info. You can go to the magnifying glass icon at the top of this page and type in her @kateman name and pull up all that she has posted. We have our Discussion board list of topics that you can scroll through forever and pick up conversations that you may find helpful too. That is located on the opening page for this group. I see that you are now taking prednisone; that should help to make you feel better soon. It always did wonders for me. I hope that you are able to avoid the smoke there in Ca. that has to be miserable. Are you able to go someplace else to get away from the smoke?

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@windwalker and @maysrx ....Teri, wasn't it @katemn? You wrote @kateman. Nan

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@migizii

I hope your tests are negative but your doctor sounds compassionate. You mentioned “chest sweats” at night. As I consider myself cold blooded-all day long I wear more clothes than anyone else I see or live with, many nights I wake up feeling like I could fry an egg on my body, but with no sweat. I find this very strange. Does anyone experience this kind of experience as well as your chest sweats?

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migizil, I'm hot most of the time too but no sweats. I read somewhere that if you sweat at night is one of the symptoms of MAC. I took the cocktail for a year but the hot feeling did not go away. Sometimes I get it in the middle of the day. Blessing to you. Cila

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@cila

migizil, I'm hot most of the time too but no sweats. I read somewhere that if you sweat at night is one of the symptoms of MAC. I took the cocktail for a year but the hot feeling did not go away. Sometimes I get it in the middle of the day. Blessing to you. Cila

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Cila, Thanks for Letting me know.....so, the heat that I experience when sleeping may or may not be related to infection, correct? Stay safe and be well

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@windwalker

Hello Maryann. I am glad that you posted and joined our conversations. We learn so much from each other here. Have you had a chance to read over older posts yet? A member, @kateman has posted a treasure trove of good info. You can go to the magnifying glass icon at the top of this page and type in her @kateman name and pull up all that she has posted. We have our Discussion board list of topics that you can scroll through forever and pick up conversations that you may find helpful too. That is located on the opening page for this group. I see that you are now taking prednisone; that should help to make you feel better soon. It always did wonders for me. I hope that you are able to avoid the smoke there in Ca. that has to be miserable. Are you able to go someplace else to get away from the smoke?

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Hi Terri, Thank you for the welcome along with the info on where to look for more info... I keep having to remind myself that knowledge is power and to take it one step at a time so as to not be overwhelmed. I believe this group will help with just that. From the start, my doctor advised me not to google info on Bronchiectasis, etc., as she said a majority of what comes up is inaccurate, etc., however, I had already done so and it was scary to say the least. While at my bronchoscopy a few weeks back, I told her about info found on Mayo Clinic site and this group, to which she gave a double thumbs up!!

Still waiting for MAC results and may need to go in again for biopsies as we didn’t do with bronchoscopy .... which was mine, not my doctor’s decision, as at the time, I couldn’t take the chance of having to stay in hospital should a complication arise ... I am a single parent, complicated by Covid-19 and my being, according to my doctor, at very high risk (As I assume all of us with this condition are.) Anyway, my doctor had said that the bronchoscopy without biopsy has about an 80% chance of diagnosing MAC, but if nothing appears (Grows) then we still won’t know for sure until I am able to have biopsy done. (Haven’t had luck producing sputum cultures.) As for the smoke, unfortunately there’s no escape at this time, but hopefully we’ll see some relief soon.

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I had terrible back pain along the back of my bra. I knew it wasn't my spine, but seemed to be the muscles along my spine. My Dr. said it was something called Kyphosis. A back brace, physical therapy & exercises at home have really helped.

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I’m surprised no one has mentioned pleurisy for pain in back. I have it again. Stabbing pain. Excruciating. But X-ray would show it so your docs would surely have seen it.

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