Does anyone have upper back pain with MAC?

Posted by bbeers @bbeers, Mar 25 7:06am

I was diagnosed with MAC in Sept, '23. Have not started the BIG 3 . Had no symptoms and still do not have any cough and very little mucus. However this past January I started having pain in my upper back on the right side. Mac is in my right lung. Both my pulmo and ID Dr. don't think the pain is coming from MAC. It feels like someone pinching me really hard. Has anyone had pain in their back from MAC? Also, are airway clearance and nebulizing one in the same thing or two different procedures? Thank you so much.

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Nebulizing and airway clearance are separate but closely related.

Nebulizing comes first. The setup includes a compressor connected to a nebulizer. Added to the nebulizer is a bronchodilator, such as levalbuterol or albuterol followed by 3% or 7% saline. Here's a link to sample setup. There are other options available. NJH recommends this setup for its bronchiectasis and MAC patients.
https://www.monaghanmed.com/product/aeroeclipse-xl-r-ban-nebulizer-with-ombra-compressor/
While nebulizing many people also use the Aerobika inline (connected to) the nebulizer and compressor. Combination therapy: https://www.monaghanmed.com/product/combination-therapy/

Nebulizing is followed up with airway clearance, which is essentially breathing exercises. The goal of these exercises to remove the phlegm from your lungs. MAC/NTM grows in the pooled phlegm. There's a free breathing app for mobile phone called Autogenic Drainage. And you can learn more about airway clearance principles with examples here: https://bronchiectasis.com.au/physiotherapy

Someone else will have to weigh in about pain in the lung/back from MAC. This topic comes up from time to time and I would not be one bit surprised if they were related.

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@scoop

Nebulizing and airway clearance are separate but closely related.

Nebulizing comes first. The setup includes a compressor connected to a nebulizer. Added to the nebulizer is a bronchodilator, such as levalbuterol or albuterol followed by 3% or 7% saline. Here's a link to sample setup. There are other options available. NJH recommends this setup for its bronchiectasis and MAC patients.
https://www.monaghanmed.com/product/aeroeclipse-xl-r-ban-nebulizer-with-ombra-compressor/
While nebulizing many people also use the Aerobika inline (connected to) the nebulizer and compressor. Combination therapy: https://www.monaghanmed.com/product/combination-therapy/

Nebulizing is followed up with airway clearance, which is essentially breathing exercises. The goal of these exercises to remove the phlegm from your lungs. MAC/NTM grows in the pooled phlegm. There's a free breathing app for mobile phone called Autogenic Drainage. And you can learn more about airway clearance principles with examples here: https://bronchiectasis.com.au/physiotherapy

Someone else will have to weigh in about pain in the lung/back from MAC. This topic comes up from time to time and I would not be one bit surprised if they were related.

Jump to this post

I have MAC and Bronchioestaia and I also see a chiropractor and acupuncturist. The coughing is very hard on my back and at times throws out a vertebrae. These pains will go away with treatment.
The other pain I sometimes have I believe is related to the lungs and bronchial tubes. It comes and goes and at times prevents deep breaths. I will find myself making shallow breaths. During good lung times I don't have it.
I was diagnosed with MAC in 2012 but in 2010 had begun trying to find out the reason for my cough. I was a prescribed and wildland firefighter at the time and thought the cough was from smoke. After full physical I was told I was in good health even though the cough remained and pneumonia would be an outcome from a cold.
Later a sample from my lungs at MD Anderson revealed the MAC. I only just learned of the Bronchioestaia 3 months ago from a respiratory therapist even though I've been in the care of a pulmonologist since 2010.
I have always been proactive with my health. My disappointment in the medical system has been another issue to deal with. I feel if I had had the information I could have been a better more proactive person and my lungs wouldn't have deteriorated as much. I am making changes and hopefully all will be better.

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@littlebuffalogal

I have MAC and Bronchioestaia and I also see a chiropractor and acupuncturist. The coughing is very hard on my back and at times throws out a vertebrae. These pains will go away with treatment.
The other pain I sometimes have I believe is related to the lungs and bronchial tubes. It comes and goes and at times prevents deep breaths. I will find myself making shallow breaths. During good lung times I don't have it.
I was diagnosed with MAC in 2012 but in 2010 had begun trying to find out the reason for my cough. I was a prescribed and wildland firefighter at the time and thought the cough was from smoke. After full physical I was told I was in good health even though the cough remained and pneumonia would be an outcome from a cold.
Later a sample from my lungs at MD Anderson revealed the MAC. I only just learned of the Bronchioestaia 3 months ago from a respiratory therapist even though I've been in the care of a pulmonologist since 2010.
I have always been proactive with my health. My disappointment in the medical system has been another issue to deal with. I feel if I had had the information I could have been a better more proactive person and my lungs wouldn't have deteriorated as much. I am making changes and hopefully all will be better.

Jump to this post

Bronchiectasis often appears with a MAC diagnosis, and is a known risk for people with repeated cases of pneumonia.
Since you have been a member for a bit over a month, you have probably read of the many cases where Bronchiectasis has not been diagnosed - now that you know about it, what steps are you taking to help your lung health?
Sue

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I am using my nebulizer at least once a day, using levabuteral and a 7% saline solution. Until recently I didn't know to use the levabuteral first. I walk daily and take NAC and Pneumotrophin. I have an essential oil mix of peppermint, eucalyptus and frankincense I use on my chest and feet for coughing.
I am waiting on an Afflow vest, it hasn't arrived.
Until now I didn't understand how to be more proactive. The respiratory therapist has been very informative and helped me set a regimen. I think my doctor thought I knew what I had and didn't fill me in. I am changing Doctors in May and this MD has worked a lot with bronchitis and infectious diseases so am hopeful this is going to be a positive experience.

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MAC seems to be related to body type. It is possible the pain in your thoracic spine is a myofascial type of pain. See if you can go to a pain management specialist and get trigger shots. If they relieve that pain there is your answer. Depending on your lifestyle and doing the same activity over and over plus the added stress of lung disease , you can develop that- which probably doesn’t have to do with MAC but is painful I am sure especially if it lasts and gets worse before it gets better. Good luck! I’m sorry you have that pain. Irene5

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@bberrs I’ve had pain in my upper middle back between my shoulders long before I was diagnosed with MAC. It’s mostly when I get up in the morning and it doesn’t last. Once I get moving it subsides. I’ve read here many times that doctors say that it’s not from the MAC. I still believe it is.

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Years ago when I had a first bout with pneumonia, what got me to see a doctor was a sharp pain in my shoulder. I often have discomfort, sometimes pain on my left side, sort of under the shoulder blade. Strengthening exercises from a physical therapist have really helped with that and my airways clear out more easily.

REPLY
@scoop

Nebulizing and airway clearance are separate but closely related.

Nebulizing comes first. The setup includes a compressor connected to a nebulizer. Added to the nebulizer is a bronchodilator, such as levalbuterol or albuterol followed by 3% or 7% saline. Here's a link to sample setup. There are other options available. NJH recommends this setup for its bronchiectasis and MAC patients.
https://www.monaghanmed.com/product/aeroeclipse-xl-r-ban-nebulizer-with-ombra-compressor/
While nebulizing many people also use the Aerobika inline (connected to) the nebulizer and compressor. Combination therapy: https://www.monaghanmed.com/product/combination-therapy/

Nebulizing is followed up with airway clearance, which is essentially breathing exercises. The goal of these exercises to remove the phlegm from your lungs. MAC/NTM grows in the pooled phlegm. There's a free breathing app for mobile phone called Autogenic Drainage. And you can learn more about airway clearance principles with examples here: https://bronchiectasis.com.au/physiotherapy

Someone else will have to weigh in about pain in the lung/back from MAC. This topic comes up from time to time and I would not be one bit surprised if they were related.

Jump to this post

Thank you for responding. I go for a CT scan tomorrow to see if there have been any changes since last November.

REPLY
@cayenne

Years ago when I had a first bout with pneumonia, what got me to see a doctor was a sharp pain in my shoulder. I often have discomfort, sometimes pain on my left side, sort of under the shoulder blade. Strengthening exercises from a physical therapist have really helped with that and my airways clear out more easily.

Jump to this post

Thank you for sharing. I go for a CT scan tomorrow to see if any changes have occurred since last November.

REPLY
@irene5

MAC seems to be related to body type. It is possible the pain in your thoracic spine is a myofascial type of pain. See if you can go to a pain management specialist and get trigger shots. If they relieve that pain there is your answer. Depending on your lifestyle and doing the same activity over and over plus the added stress of lung disease , you can develop that- which probably doesn’t have to do with MAC but is painful I am sure especially if it lasts and gets worse before it gets better. Good luck! I’m sorry you have that pain. Irene5

Jump to this post

Thank you for responding. I go tomorrow for CT Scan.

REPLY
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