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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.

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mtyler | @mtyler | Apr 21, 2022
In reply to @sueinmn "Hello Minette - Have you been checked lately for the status of your MAC infection? Normally,..." + (show)
@sueinmn

Hello Minette - Have you been checked lately for the status of your MAC infection? Normally, pain is minimal and/or intermittent with MAC and bronchiectasis. Increased pain may be an indication of increased infection, and neither Tylenol nor ibuprofen will treat it. If you ignore MAC too long, it can do truly devastating damage to your lungs.
When was the last time you had a complete workup - sputum culture with active colony count, and lung CT?
When you nebulize, are you using 7% saline? Some of us have had very good luck with that keeping our MAC infection at bay.
Sue

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The original year I was treated for MAC, Staph infection and pseudonomas was 2019 for 14 months. Last year in 2021 I started having more discomfort and had two cough specimens that came back positive for MAC. I just sent one in and it will be a month or two before the results are back. I had two chest ct's last year also that were consistent with bronchiectasis and/or MAC. My infectious disease doctor is fine keeping me off the MAC medications because when I am on the ethambutol, rifampin or rifabutin, and azithromycin, the side effects make it difficult to go into the office to work and I am considered an essential employee. I am close to retirement and would rather not try to find a new job. However my doctor does want me to go on the MAC meds if I am not doing better using the vest and nebulizer. Its a pain to do my job remotely and did do that for 9 months due to covid. I use a NAC or acetylcysteine in the nebulizer. The achiness in my lungs is real and I empathize with others who have these symptoms. It is worse when fatigued. It is really great to get feedback and insight from others on this whole topic. Thank you for responding! Minette

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Bippus-Campbell Gloria | @gbippy | Apr 22, 2022

I have the same problem. I’m told it’s my heart. I’ve gone through every heart test possible. No it’s not my heart. Then your told its old arthritis. The problem is they actually don’t know themselves. I use a heating pad to relieve some of the pain. I still say it’s some form of inflammatory and the big three is not the right meds to fight it. We need and anti inflammatory medication. I’m working on that now. I see my infectious disease doctor Monday. I also see my Neurologist on Monday I’m going to ask him. He does a lot of scientific research maybe he might know something. You have a good day. Gloria

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1 reply
mtyler | @mtyler | Apr 24, 2022
In reply to @becleartoday "I believe that it was Dr Aksamit who in his recent Q and A described this..." + (show)
@becleartoday

I believe that it was Dr Aksamit who in his recent Q and A described this pain as pleural pain. The inflammation in our lungs impacts the pleural tissues that surround them and this can cause pain. Also, the rib cage can be impacted which can cause pain. I do not currently have this type of pain but I know many do.

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I would really like to listen to the Q & A from Dr.Aksamit on pleural pain as I am trying to differentiate my lung pain that is from bronchiectasis and MAC from other pain such as GERD, which I periodically take prilosec for flair ups. Please post the link as soon as you are aware of it. Thank you so much for your help I really appreciate it! mtyler

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Bippus-Campbell Gloria | @gbippy | Apr 27, 2022
In reply to @gbippy "I have the same problem. I’m told it’s my heart. I’ve gone through every heart test..." + (show)
@gbippy

I have the same problem. I’m told it’s my heart. I’ve gone through every heart test possible. No it’s not my heart. Then your told its old arthritis. The problem is they actually don’t know themselves. I use a heating pad to relieve some of the pain. I still say it’s some form of inflammatory and the big three is not the right meds to fight it. We need and anti inflammatory medication. I’m working on that now. I see my infectious disease doctor Monday. I also see my Neurologist on Monday I’m going to ask him. He does a lot of scientific research maybe he might know something. You have a good day. Gloria

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I saw my neurologist and he said due to all the Pneumonia, Mycobacterium, and Bronchiectasis we have most likely developed some sort of nerve damage and plursity. They need to look further and see which it might be. If it’s inflammation then be put on an anti inflammatory med. He is sending his recommendation to my doctors. You may mention to yours.

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cmb1 | @cmb1 | May 19, 2022
In reply to @gbippy "Sue, I have lately been coughing up white stringie globs do you have any idea what..." + (show)
@gbippy

Sue, I have lately been coughing up white stringie globs do you have any idea what that may be? I sent the sputum in for culture. As usual it takes a while before we get it back. Growing cultures takes 3-12 weeks sometimes. Gloria

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I have had these frequently with bronchitis. Oddly enough, they no longer occur since my MAC diagnosis. Curious as well.

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cmb1 | @cmb1 | May 30, 2022
In reply to @jillsart "I am looking for a new PCP also as mine won’t even give my anything for..." + (show)
@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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Years ago before my bronchiectasis and MAC diagnosis I had stabbing intermittent chest pain in that area that I had to call EMT for ER. The ER doc found no reason to keep me but super high BP was all she said in a nut shell. After the event was over, I had pain on breathing in that hurt so bad I had to take pain reliever. Then I never had it again. It is still a mystery to me. Don’t give up hope just yet! Our lowest times, I find, are often just before some good and peaceful times! I will keep you in my thoughts today in hopes for your Chest pain relief and overall good days to come!

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Brenda R. | @brigby | May 31, 2022

While lungs can’t sense pain, the intercostal muscles certainly can. I’m finding massage & yoga really help. It’s a struggle, every day, but I know I’ve got to try.

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laurademaine | @laurademaine | Jun 1, 2022

I was diagnosed with MAC in January. Have had no real symptoms other than fatigue for several months. About 2 weeks again went to Busch Gardens and rode on most of the roller coasters. I felt like I got whiplash from one of them. The next day I felt like I was in a car crash. My felt major tightness and pain in my lungs and upper back. It has gotten slightly better but still quite painful. Not sure if the disease is just now showing symptoms or if the rides caused damage to my ribs and lungs. Has anyone experienced such a thing? Wondering if I should have another CT done to check it out. I have not begun the big 3 meds yet. Just doing nebulizer, aerobika and exercise each day.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 1, 2022
In reply to @laurademaine "I was diagnosed with MAC in January. Have had no real symptoms other than fatigue for..." + (show)
@laurademaine

I was diagnosed with MAC in January. Have had no real symptoms other than fatigue for several months. About 2 weeks again went to Busch Gardens and rode on most of the roller coasters. I felt like I got whiplash from one of them. The next day I felt like I was in a car crash. My felt major tightness and pain in my lungs and upper back. It has gotten slightly better but still quite painful. Not sure if the disease is just now showing symptoms or if the rides caused damage to my ribs and lungs. Has anyone experienced such a thing? Wondering if I should have another CT done to check it out. I have not begun the big 3 meds yet. Just doing nebulizer, aerobika and exercise each day.

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Well, Laura, from your description of the sudden onset following the rides, I personally wouldn't think it is my lungs, but rather an injury. Have you talked to your primary doctor?
Sue

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1 reply
laurademaine | @laurademaine | Jun 1, 2022
In reply to @sueinmn "Well, Laura, from your description of the sudden onset following the rides, I personally wouldn't think..." + (show)
@sueinmn

Well, Laura, from your description of the sudden onset following the rides, I personally wouldn't think it is my lungs, but rather an injury. Have you talked to your primary doctor?
Sue

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I sent a message to my pulmonologist and he said to call my PCP. They also don’t think it has to do with MAC but rather an injury. Going to try Tylenol, heat and cold. Hopefully I be feeling better in another week or so. Thank you. For your response.

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