1. < MAC & Bronchiectasis

Extreme fatigue with MAC

Posted by src3acs @src3acs, Feb 26, 2018

Good Morning, I am new here so this may have been discussed before. I was diagnosed with MAC in 2012 after I was diagnosed with breast cancer. I had a biopsy and lung wedge resection...both confirmed the MAC. In 2015 I had a bronchoscope done which again confirmed the MAC and bronchiectasis. I have seen a Pulmonologist, infectious disease and my primary care doctor. Everyone seems up in the air whether to treat or not. They seem to be leaving the decision up to me. I don't have a cough, I do have some shortness of breath occasionally but I am always tired. No matter how much I rest or sleep.....I am tired and sometimes exhausted after minor activity. Is fatigue a main symptom of the disease. Would treatment help my fatigue or make is worse. Thank you!

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

migizii | @migizii | Sep 9, 2019
In reply to @sueinmn "NIH is a federal government agency, whose charge is biomedical & public health research. In general,..." + (show)
@sueinmn

NIH is a federal government agency, whose charge is biomedical & public health research. In general, it sponsors studies done in other venues, or collects and analyzes data from studies, journals and reports. NIH is not (as far as I know) doing primary patient care, but through your physician you may be a participant in one of their studies. I look to NIH as a source for scientifically vetted information. Perhaps the previous poster was referring to "NJH," short for National Jewish Health, which is a big & well-respected provider of care for lung ailments, does a lot of research on the issues, and hosts an annual(?) conference on Bronchiectasis and related infections.

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I seem to be having some trouble navigating the bronchiectasis site lately, but wanted to share that I have been diagnosed for about three years and have not had MAC or NTM infections. I have had a couple illnesses that I became more sick than most people and required short antibiotic interventions. However, fatigue has been an issue that has overridden my life since this illness has taken hold of my life. It just happens to wax and wane in whatever nature it feels like taking......I concentrate on keeping everything as regular as I can-eating, sleeping, exercising (very lightly or I get exhausted).....and I try to keep doing my twice daily treatments as regular as possible.....I am grateful for my “new normal” and all of you as you give me so many wonderful ideas and support!

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2 replies
Ethan McConkey, Moderator | @ethanmcconkey | Sep 11, 2019

@migizii, sorry to hear you're having some challenges with navigating Connect. You can find helpful tips on how to use Connect here: https://connect.mayoclinic.org/get-started-on-connect/ Or write to us using this form https://connect.mayoclinic.org/contact-a-community-moderator/ I'm happy to help you get things figured out.

Migizii, it sounds like the fatigue you experience is unpredictable. Is that true or have you found patterns to the fatigue that make it easier to manage?

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1 reply
migizii | @migizii | Sep 11, 2019
In reply to @ethanmcconkey "@migizii, sorry to hear you're having some challenges with navigating Connect. You can find helpful tips..." + (show)
@ethanmcconkey

@migizii, sorry to hear you're having some challenges with navigating Connect. You can find helpful tips on how to use Connect here: https://connect.mayoclinic.org/get-started-on-connect/ Or write to us using this form https://connect.mayoclinic.org/contact-a-community-moderator/ I'm happy to help you get things figured out.

Migizii, it sounds like the fatigue you experience is unpredictable. Is that true or have you found patterns to the fatigue that make it easier to manage?

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Thanks for your response, however it didn’t show up on my email account....sometimes they do and sometimes they don’t, even though I am “following” the group.” My fatigue is unpredictable and I do get good sleep. It’s frustrating especially as I’m still working full time.....I know if I don’t get enough sleep, the next day is extremely challenging. Also, I have to make sure I eat regularly and keep a balanced diet to ward off fatigue. I need to find some kind of exercise that is more consistent and enjoyable. I broke my foot, and it is now in the rebuilding stage so it’s still sore-making exercise uncomfortable (unless I’m in a therapy pool, but I don’t have access right now due to my work hours). I’m hoping to get some access next month🤞Thanks again for thinking of me.....I will also try doing a hard off on my tablet and then restart. Perhaps that will help!

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3 replies
Brenda R. | @brigby | Sep 11, 2019
In reply to @migizii "Thanks for your response, however it didn’t show up on my email account....sometimes they do and..." + (show)
@migizii

Thanks for your response, however it didn’t show up on my email account....sometimes they do and sometimes they don’t, even though I am “following” the group.” My fatigue is unpredictable and I do get good sleep. It’s frustrating especially as I’m still working full time.....I know if I don’t get enough sleep, the next day is extremely challenging. Also, I have to make sure I eat regularly and keep a balanced diet to ward off fatigue. I need to find some kind of exercise that is more consistent and enjoyable. I broke my foot, and it is now in the rebuilding stage so it’s still sore-making exercise uncomfortable (unless I’m in a therapy pool, but I don’t have access right now due to my work hours). I’m hoping to get some access next month🤞Thanks again for thinking of me.....I will also try doing a hard off on my tablet and then restart. Perhaps that will help!

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@migizii Sleep is the ball game for me! Especially when trying to work or watch grandkids!

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alleycatkate | @alleycatkate | Sep 12, 2019
In reply to @migizii "Thanks for your response, however it didn’t show up on my email account....sometimes they do and..." + (show)
@migizii

Thanks for your response, however it didn’t show up on my email account....sometimes they do and sometimes they don’t, even though I am “following” the group.” My fatigue is unpredictable and I do get good sleep. It’s frustrating especially as I’m still working full time.....I know if I don’t get enough sleep, the next day is extremely challenging. Also, I have to make sure I eat regularly and keep a balanced diet to ward off fatigue. I need to find some kind of exercise that is more consistent and enjoyable. I broke my foot, and it is now in the rebuilding stage so it’s still sore-making exercise uncomfortable (unless I’m in a therapy pool, but I don’t have access right now due to my work hours). I’m hoping to get some access next month🤞Thanks again for thinking of me.....I will also try doing a hard off on my tablet and then restart. Perhaps that will help!

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Hi @migizii Just noticed that you are looking to get back to a “therapy” swimming pool. Pools are very high sources of mycobacterium.
Although you do not have NTMs now, bronchiectasis leaves you susceptible. I learned about pools and hot tubs being a source of infection from this Mayo site. https://www.google.com/url?sa=t&source=web&cd=12&ved=2ahUKEwiq5Zaf1MrkAhVrg-AKHdgjC-UQFjALegQIAxAB&url=https%3A%2F%2Fonlinelibrary.wiley.com%2Fdoi%2Fpdf%2F10.1046%2Fj.1365-2672.1999.00909.x&usg=AOvVaw2maBwknTQCas398E3gYMMF
Kate

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1 reply
judyhodgern | @judyhodgern | Sep 12, 2019
In reply to @macjane "Would you ever push for Cleveland Clinic? I am at the University of Michigan but could..." + (show)
@macjane

Would you ever push for Cleveland Clinic? I am at the University of Michigan but could be old school.

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Hi there Frustrating.I believe that if there’s a possibility that you could feel better and I definitely didafter I started the treatments and yes the medications can be rough —-but doesn’t mean that you’re going to get any of the side effects. I was scared but I actually have not had any SE’s and I’ve been on treatment for about five weeks of five anabiotic‘s and I don’t cough 95% as much as I did and I was going through a big Kleenex box every day😫😫 now I don’t ——-that to me was well worth the treatment I am still a little fatigued and tired if I do more than one “bigger” thing a day, but I can contend with that if I take a nap in the middle of the day. Good luck to you in decisions. A Good Dr who knows NTM well, is a Must!!!
I hope you will make a decision best for you!!!!
Sincerely Judy

REPLY
baz10 | @baz10 | Sep 12, 2019
In reply to @migizii "I seem to be having some trouble navigating the bronchiectasis site lately, but wanted to share..." + (show)
@migizii

I seem to be having some trouble navigating the bronchiectasis site lately, but wanted to share that I have been diagnosed for about three years and have not had MAC or NTM infections. I have had a couple illnesses that I became more sick than most people and required short antibiotic interventions. However, fatigue has been an issue that has overridden my life since this illness has taken hold of my life. It just happens to wax and wane in whatever nature it feels like taking......I concentrate on keeping everything as regular as I can-eating, sleeping, exercising (very lightly or I get exhausted).....and I try to keep doing my twice daily treatments as regular as possible.....I am grateful for my “new normal” and all of you as you give me so many wonderful ideas and support!

Jump to this post

What is NTM? I want to know the whole words. Thanks.

REPLY
1 reply
Ethan McConkey, Moderator | @ethanmcconkey | Sep 12, 2019
In reply to @migizii "Thanks for your response, however it didn’t show up on my email account....sometimes they do and..." + (show)
@migizii

Thanks for your response, however it didn’t show up on my email account....sometimes they do and sometimes they don’t, even though I am “following” the group.” My fatigue is unpredictable and I do get good sleep. It’s frustrating especially as I’m still working full time.....I know if I don’t get enough sleep, the next day is extremely challenging. Also, I have to make sure I eat regularly and keep a balanced diet to ward off fatigue. I need to find some kind of exercise that is more consistent and enjoyable. I broke my foot, and it is now in the rebuilding stage so it’s still sore-making exercise uncomfortable (unless I’m in a therapy pool, but I don’t have access right now due to my work hours). I’m hoping to get some access next month🤞Thanks again for thinking of me.....I will also try doing a hard off on my tablet and then restart. Perhaps that will help!

Jump to this post

@migizii To prevent Connect-related emails from going to your junk mail, add Connect's sender address "@n1.hubapplication.com" to your safe sender list. Here are instructions on how to do this for various email types:
– AOL http://www.subscribermail.com/safe-list/address-book-aol-mail.html
– Gmail, Outlook and Yahoo http://onlinegroups.net/blog/2014/02/25/how-to-whitelist-an-email-address/

Additionally, when you find a Connect email in your spam folder, move it back to the inbox and mark "Not Spam". Eventually your email will get it.

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1 reply
marthachs | @marthachs | Sep 13, 2019
In reply to @baz10 "What is NTM? I want to know the whole words. Thanks." + (show)
@baz10

What is NTM? I want to know the whole words. Thanks.

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Non-tuberculous Mycobacteria

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 14, 2019
In reply to @migizii "I seem to be having some trouble navigating the bronchiectasis site lately, but wanted to share..." + (show)
@migizii

I seem to be having some trouble navigating the bronchiectasis site lately, but wanted to share that I have been diagnosed for about three years and have not had MAC or NTM infections. I have had a couple illnesses that I became more sick than most people and required short antibiotic interventions. However, fatigue has been an issue that has overridden my life since this illness has taken hold of my life. It just happens to wax and wane in whatever nature it feels like taking......I concentrate on keeping everything as regular as I can-eating, sleeping, exercising (very lightly or I get exhausted).....and I try to keep doing my twice daily treatments as regular as possible.....I am grateful for my “new normal” and all of you as you give me so many wonderful ideas and support!

Jump to this post

@migizii Aaah, fatigue! The bane of my existence! I had a long discussion about it with my ID doc this week, because it can blast me without notice! He explained that with bronch & MAC and antibiotics and poor sleep, it's a grand slam - each one alone can cause fatigue, taken together it's almost a certain thing.
One thing I have learned - except on my very worst days, when I will lie down and try to sleep for one hour, then force myself to get up, I force myself to keep going instead of settling in on the couch. "Keep going" is relative - it may mean going to an event and walking from bench to bench, resting a few minutes at each then moving on. Or it may mean like today (after three insanely busy days) - a load of laundry, sit and work at the computer a bit, another load, sit and eat something, a short stint in the gardens, sit and enjoy the pond, a short walk...
This promotes better sleep, leaves me less frustrated as bits are still accomplished, and seems to make the heavy fatigue days less frequent. Too much giving in to the urge to plop down and not move seems to make it worse.
And, if I have little energy, I eat poorly, so I force-feed myself. My house is stocked with low-sugar energy bars, cashews, protein shakes, cheese, fruits, high-protein smoothies - all grab'n'eat things - which I eat in small portions every hour or two. I find a little caffeine helps too.

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