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!

@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 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:
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@baz10

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

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Non-tuberculous Mycobacteria

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@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!

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@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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@sueinmn

@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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Very well stated!
Thanks!

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@alleycatkate

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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I’ve heard this before @alleycatkate but I’m really struggling trying to find a way to lessen the pain in my foot (pretty much a constant 5). I certainly do NOT want to complicate my lung issues AT ALL! I’m doing physical therapy for my foot and my ability to walk improves, but the pain level will not abate yet. I guess I better not take any chances but find other ways to lessen foot pain through some other means……..I am going to the bronchiectasis workshop in Denver next weekend and I am excited to learn as much as I can about this illness.

Liked by alleycatkate

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@ethanmcconkey

@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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I still can’t get my email to do what you are saying here. The only way that is seemingly working is to go to the group site and click on the bell, which brings up all the messages. I’m not the best at technology, but it used to work swimmingly….

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@migizii

I’ve heard this before @alleycatkate but I’m really struggling trying to find a way to lessen the pain in my foot (pretty much a constant 5). I certainly do NOT want to complicate my lung issues AT ALL! I’m doing physical therapy for my foot and my ability to walk improves, but the pain level will not abate yet. I guess I better not take any chances but find other ways to lessen foot pain through some other means……..I am going to the bronchiectasis workshop in Denver next weekend and I am excited to learn as much as I can about this illness.

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Tell me more about this bronchiectasis workshop in Denver. How did you find out about it?

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@franthony

Tell me more about this bronchiectasis workshop in Denver. How did you find out about it?

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@frananthony I read about last year’s workshop on this site somewhere. It is sponsored by National Jewish Health and I have a website listed on my confirmation, if you’re interested in looking at it. http://www.njhealth.org/CME

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@migizii

@frananthony I read about last year’s workshop on this site somewhere. It is sponsored by National Jewish Health and I have a website listed on my confirmation, if you’re interested in looking at it. http://www.njhealth.org/CME

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Thanks!

Liked by migizii

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@migizii

I still can’t get my email to do what you are saying here. The only way that is seemingly working is to go to the group site and click on the bell, which brings up all the messages. I’m not the best at technology, but it used to work swimmingly….

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Hi @migizii I'm sorry you are continuing to have problems with your email notifications. Please go to the following link to fill out the "Contact Community Moderator Form" so that we can try to take a closer look at the problems you are having.

https://connect.mayoclinic.org/contact-a-community-moderator/

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