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!

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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.

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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
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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!

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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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@nick52

@alleycatkate & everyone!  KATE as per our phone conversation here is the results! Yesterday was a very good day with good news!  My pulmonary doctor gave me my result of the CTScan. My scan show a very stable and show nothing abnormal to a bronchiectasis lung.

 Very glad ! To me it means whatever I do is working for now.  The doctor explain that the micro nodules on the lungs is the dilatation of the tree buds and when it is infected the nodules are bigger on the scan.  It is not showing any of it!  He says that

he will recommend a CTScan in 2 years (yeah less radiation) but if I feel things aren’t going find to give a call to his secretary and he will take care of it right away . He gave me a prescription of Avelox (antibiotic) in case I start a cold or beginning

of congestion due to a cold I must take it for 7 days to prevent it. He has always done that because of my bronchiectasis is more prone to pneumonia.  I have the best pulmonary doctor I could ask for.  Thanks to him if I am doing so well because he has followed

me since 2009. He is cute lol and a sweetheart! He always take the time to talk and answer all my questions. I know one thing I LOVE THOSE DOCTOR OHIRRA’s PROFESSIONAL PROBIOTICS AND MY MILK THISTLE TO KEEP MY STOMACH Acid free!  I THING IT IS A GOOD PREVENTION,

Have a nice day everyone!  My divine energy is with you all! Nicole

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@nick52 Hi Nicole!! I can’t believe I am just seeing your message from 2018!!??? I think I entered the twilight zone….and never found my way out!! Haha. Somehow the settings changed on the Mayo site at one time but not sure that I can blame this oversight on that!! I hope you are doing well and maybe have kicked this disease to the curb. Be well.
Hugs,
Kate

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@alleycatkate

@nick52 Hi Nicole!! I can’t believe I am just seeing your message from 2018!!??? I think I entered the twilight zone….and never found my way out!! Haha. Somehow the settings changed on the Mayo site at one time but not sure that I can blame this oversight on that!! I hope you are doing well and maybe have kicked this disease to the curb. Be well.
Hugs,
Kate

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@alleycatkate
Hi Kate,
I have been out of this site for a long. I am so glad to hear from you! Glad you made it through with that Covid Virus. I am glad I didn’t catch it but my husband did! I am feeling very well so I can thank God every day for being so good with me. Hope we can see you in Florida. We will be leaving the last week of November or first week of December ti go back to Palm Hill in Largo. Take good care of yourself Kate ! Love and hugs!!!

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Hi,
It is normal if the Mac is active. My specialist thought it was better for me not getting on antibiotics because I didn’t have much symptoms. When I feel congested , fatigue andbreath is different. I take Clear lungs. Or my surgeon do a bronchoscopy to wash my lungs once a year or every two years. I am on my third year right now. It wii probably be worst with the antibiotics. My specialist said he recommends it when the patient has a lot of symptoms, Good luck with it! I never regretted my decision to use less invasive treatment. I am doing really good!

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