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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joann | @joanng | Nov 20, 2020

In reply to @windwalker "Hi Joann. Are you experiencing much in the way of coughing?" + (show)

No my coughing has decreased.
The dr stated maybe from excessive coughing but I’m not coughing as much. I’m able to control my breathing to reduce the amount of coughing. Probably not good since coughing helps.

garry | @garry | Nov 21, 2020

The lining around the lungs can cause pain. I believe it is called plurise. Please excuse the spelling.Dr's are human and some time they do not know what they are talking about.They take all the #'s from the blood ,spit, urine,pictures and pressures and try and figure out whats going on. They are learning about mac just like they are are with covid. He's wrong I get pain Garry in Bc Canada

Sue, Volunteer Mentor | @sueinmn | Nov 21, 2020

In reply to @joanng "No my coughing has decreased. The dr stated maybe from excessive coughing but I’m not coughing..." + (show)

Hi Joann - I'm glad to hear your cough has decreased, but you are correct - you need to keep doing it to clear your lungs - hard advice when you hurt!

Coughing can cause inflammation and pain outside the lungs that can feel like lung pain. One type is pleurisy, inflammation of the pleura, the tissue around the lungs. This is usually felt in the lung area and can radiate to the back and make it extremely hard to take a full breath. Another is costochondritis - pain/inflammation of the cartilage that attaches your ribs to the sternum. Coughing and sudden intake of breath are very painful, but sometimes you can breathe in slowly and carefully to draw a full breath. There are undoubtedly other causes too. Your PCP is a good person to diagnose it.

I have gotten both at different times from excessive coughing. Both were treated with pain relievers, and in the case of pleurisy a short course of prednisone.

Sue

oldkarl | @oldkarl | Nov 21, 2020

About chronic bronchiectasis. Several sources name this as a Positive Obligate sign of Gelsolin, or some call it Finnish Amyloidosis. There is little you can do about this old Viking Hell, except treat the crap as it comes along. Skin, brain, teeth, toes, heart, nerves, whatever. The OMIM number is 137350 or 105120 or 612557. There are more, but just put in GSN. It's easier. Systemic, either dominant or recessive, fatal, progression can often be slowed by heavy injections of Methotrexate. Mine has been. I have a list of about 200 recognized signs and symptoms, plus a bunce of other DNA issues related to GSN, such as FKTN, ZNF189, BAAT, etc.

joann | @joanng | Nov 22, 2020

Thank you for this information.

jr2366 (Jennifer) | @jr2366 | Dec 17, 2020

You know I have lung pain myself right now and few weeks ago I was diagnosed with MAC lung disease is that what you have as well?

thumperguy | @thumperguy | Dec 17, 2020

Joann, sorry along with everything else you’re enduring frustration too. This is a long shot but it might be worthwhile to rule out pleurisy as the source of the discomfort. Don

oldkarl | @oldkarl | Jan 1, 2021

@joanng, there area number of issues that can and do cause chest and other pains. I have several disorders, autoimmune, that bring this on. Most of the pains come from specific organs or tissues. Such as: Pain just above and toward the outside of the left nipple comes from the spleen, usually Gelsolin. between the nipple and the heart may be bronchiectasis, not from the lung itself but from the inflamed tissue around the lung. same on right side. Pain in the center, at the same level, might be be angina, or various heart issues. Slightly above might be hiatal hernia, or esophageal cancers such as Barrett's can become. I have had about 50 minor and major surgical procedures, and every darn one of them left me with pain of some location and type. I get a burning pain in my forehead and scalp because I have the gene for cryoglobulinemia. I have SRTD2 (Short Rib Thoracic Dysplasia Type 2) which makes it hard to breath during exercise, and leaves me with an awful sense of drowning in my own sweat, and pain all over the chest and spine afterward. So get a total gene sequencing, if you can afford it. They are about $300-$400 from Sequencing, Apollo, and many others. Any person with more than one issue should get their genome sorted out, and tell them I sent you. oldkarl

ellenn | @ellenn | Jan 1, 2021

In reply to @oldkarl "@joanng, there area number of issues that can and do cause chest and other pains. I..." + (show)

Wow, to live with the may be or might bes is a real challenge, isn't it. You sound very brave with a lot of medical curiosity and knowledge. I also have autoimmune problems including Transverse Myelitis and low thyroid and lots of nerve pains and itching, so I can identify with the challenge of dealing with multiple health problems.
Can you tell me why you did the genetic testing, has it helped, and how can I do it too.
Thank you so much!
Ellen