Chest and upper back pain with bronchiectasis and pseudomonas

I understand. Two years ago when my MAC/Bronchiectasis was months away from formal diagnosis…I too complained of tightness, pain, true discomfort in specific areas of my chest and back. My pulmonologist told me the exact same thing. “The lungs don’t register pain”. Thank goodness we live in a country where we can loudly disagree to disagree. Of course discomfort, tightness, pain, all register “differently” in-each of us. We are individuals all with unique traits, talents, and ranges of sensitivity and awareness; some persons even more attuned and perceptive than average.

Bronchiectasis is a chronic and debilitating lung disease, characterised by irreversible dilatation of the bronchi as consequence of airway injury and (medical quote not my own”. When I interpret this medical quote…I believe that “inflammation “ of any nature in any location in my body will cause me discomfort that can rise to the level of pain…in my register.

My “pain” did not diminish until after a 6 month regimen of the nasty cocktail of three (Azithromycin m Rifampin, Ethambutol). I still have occasional tightness and discomfort…but not at the same level.

So, to end….your pain is “not in your head”….it is in your body. I pray you heal quickly.

Regina

What do you mean Finnish Amyloidosis? I have Amyloidosis of Laryngeal and it spread to sinuses down to esophagus after COVID Feb 2020, now have Asthma, GERD, chest pain, and short of breath.Taking Anuitty Ellipita, Dexillant, and on anti-inflammatory diet, and pureed food. Stopped Phillips Bi-Pap after recall, had all the effects listed.

@feb ... Kathy, sounds to me that you have what is known by a bunch of different names besides Finnish Amyloidosis. I typically use Gelsolin (GSN - 2934), Meretoja's, or other names. It is part of Melanoma, a cancer. Look it up in Wikipedia or Google. It is sometimes known as FKTN (Limb Girdle Muscular Dystrophy- LGMD2m LGMDc4). It is systematic, meaning it attacks every cell in the body by making scrap of the Actin web around the cell. It i slow, but deadly. It eventually gets into the heart and gives it arrythmia, sometimes CPVT or other problems. I have had 53 cancer surgeries and/or treatments, and am looking at more ahead. Most doctors are too lazy to do the diagnostic workup required. It is basically a protein problem. It is easy to spot, if you know the signs. University of Helsinki and Mayo (Martha Grogan) have good "you-tubes" on the diagnosis. So do Ambry, Sequencing.com, Nebular, . . . . I got my first help toward the diagnosis from Ambry and Alnylam. It is not nearly as rare as some naïve doctors pretend. My first sign was having my tonsils removed at age 4. Then esophageal cancers, prostate, thyroid, kidney, heart, lung nodules, Lissencephaly, inguinal hernias, splenomegaly, perianal bloody rash, red and swollen eyelids and cheek bones just below eyes, cracking teeth, CALR(systemic polymorphic fragile capillaries), burning teeth, mouth and eye sores, skin lesions, polydactyl genes in the genomes, surgeries on shoulders, hips, knees, ankles, wrists. Proteinuria from NTproBNP lab tests (NOT! proBNP. That test is useless). Foam on urine in toilet, bloody urine, about 3 cm. deep, alternating constipation and diarrhea,. Chronic Lymphocytic Leukemia, Anemia, Platelet 4, skin lesions al over shoulders and arms down to wrists. Most especially, the existence of the GSN - Amyloidosis - Myeloma-genes, and perhaps Walker-Warburg, and FKTN And the heart. Any heart wall over 12 thickness, especially closer to 19. And any arrythmia oldkarl

So sorry to know that u have been threw so much. Glad you have found a Dr to help now. I have world class surgeon and now apart of OSU Amyloidosis Clinic. Today I went for first appointment to the UC POST COVID CLINIC. I hope I'm on my journey to some answers and relief. Please share anytime and your wealth of knowledge. Take care.

@dandy481, I'm not sure if you are looking for video for beginner yoga or for people new to MAC and Bronchiectasis. So I'll offer both.

Here's the child's pose that @windwalker finds helpful https://www.mayoclinic.org/healthy-lifestyle/stress-management/multimedia/childs-pose/vid-20453580

Mindful movements

See more videos here: https://connect.mayoclinic.org/blog/mindfulness-in-health/tab/resources/

- NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/ from Kate

Hi, I have been complaining with the same problems for the past two years. Mine gets worse when I use my arms straight out like doing dishes, mopping the floors. All I’m told is Arthur is visiting. This isn’t every day. About five days a week. I use a heating pad. We can’t take any inflammatory meds while being on the MAC meds. If you find anything more please let me know it’s awful. Gloria

I too have had the upper back pain, mainly on my right side where the infection is. I find it difficult to find a bra that I can tolerate for very long. I’ve also been told that it’s impossible to feel the lung but we know what we’re feeling! A heating pad helps me

Maybe not the lung itself, but a muscle you have injured while coughing or pleurisy (irritation of lining between outside of lung & chest wall) or chostochondritis (irritation of cartilage attachment to ribs). I find that carefully stretching my chest and upper back several times a day relieves the pain.
I find that my pain worsens when I try to "protect" the area by minimizing motion. In pain rehab, I learned that regular, gentle stretching every day gradually loosens things up. As a matter of fact, today, after 3 crazy weeks of preparing for an art show and working on my bathroom, everything hurts. My body is yelling "Leave me alone. I just want to curl up in bed and sleep." But, I got up and am moving around slowly, stopping every few minutes to stretch & do yoga breathing. After 2 hours, I still hurt but am able to move pretty normally.
I would suggest that maybe a PT consult for some stretching and breathing techniques might help. Have you tried any exercises?
Sue

Thank you for that information Sue!!
I’ll definitely look into it. I’ve realized from this forum that I have been given little information on living with this diagnosis.

Hi Sue, my Pulmonary Rehabilitation class has helped tremendously. I’m starting to get better. Thank you, for your help. Come to think of it I had that infection back in the 90’s. I will get checked out. Gloria.