Extreme fatigue with MAC
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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@src3acs, NIH is up there near you. They are quite reputable and cutting edge.
@src3acs, Please, others who have completed the BIG 3 antibiotic treatment weigh in on this. I have not taken these antibiotics; so, I don't know If things improve or not, energy-wise. So far as I can see, those of us with negative sputem tests, never did regain the energy we once had. I have a few days where I might have a day of feeling normal and energetic. Mostly, I have to take stimulants to get me going. That is not ideal, but I begged my doctor for them. I told him that I felt my life wasn't worth living if I couldn't get off of the couch. This is not my proudest post, but it is my most honest.
@colleenyoung , please read this.
@windwalker Terri, I totally agree. I was not very active before taking up tennis in 2002. I do believe the frequent challenge to my lung capacity has really helped me dealing with bronchiectasis and MAC. Besides tennis, my husband and I travel to Wyoming every fall to hike the canyons in the Grand Teton National Park for the past 7 years. We have gone as high as 9,000+ feet above sea level. I do have trouble with the altitude and need a couple days to acclimate. But I'm glad I'm still able to do long hikes. I'm turning 65 in a couple of weeks There are women in my area who are in their 70s and 80s and are still playing tennis 2-4 times a week. So I think I can do the same. That is very encouraging to me. I hope I can keep going for as long as my body lets me. I'm not worried about my lungs as much as my knees. They are the ones that need to be babied.
Dear Terri @windwalker. I thank you for your honesty! This forum is a place to talk frankly and to be able to so without fear of being judged. We learn coping skills from each other, get information and support. But sometimes it just helps to say, "this sucks!" I invite you to lean on fellow members of the MAC group while we offer a virtual embrace.
@windwalker so sorry to hear that. your honesty will help others, thank you. @src3acs I have been and still are on the big 3, I definitly have more energy than before I took them, but some days the meds make me tired, that and menopause.
I have not completed the Big 3 yet, and my energy has not returned. But I am considered “elderly” now at 68. So maybe fatigue is expected. There is no shame in needing stimulants. The ID doctor insisted I use marijuana for my lack of appetite. I have my card but still haven’t used any! I’m sure I’ll get to it. I always taught my children whether at school or at home - need and want are two different things, just like fair is not equal - fair is everyone gets what they need!
@windwalker Terri, don't be too harsh on yourself. No matter how hard we try to be strong and independent, we all have times when we need help of some kind, actually any kind. to make us feel better. You have been through a lot. But you are still standing. I can tell that you are a fighter. Despite your own illness, you are still here trying to help others. I'm very proud of you.
I live in the Fredericksburg area of VA. Not far at all from N. VA. I was born and raised in Maryland. I have only been in VA for 4 years.
Terri....your very honest post made me tear up. It's so hard when you have energy and strength one day and the next day you are exhausted for no apparent reason. Again....fatigue and occasional shortness of breath are my only symptoms. I made an appointment to follow up with my pulmonologist since my fatigue is getting worse. I will see him on March 12th. My husband and I talk about my fatigue and he is very understanding....but I have been hiding it from the rest of my family and from work. Not sure how much longer I can continue to hide it.