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src3acs (@src3acs)

Extreme fatigue with MAC

MAC & Bronchiectasis | Last Active: Sep 15, 2019 | Replies (310)

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@src3acs

Hi Irene5, I am asking anyone at this point if they had fatigue as a major symptom before starting treatment. I have told my husband it's hard for me to understand that I am ill with something when I don't feel sick. I just feel tired. For example….Saturday I watched my niece play college softball for 4 hours. I was so tired I was in bed by 8:30…..woke up at 8:20 the next morning……went to church with my family, had lunch and was back in bed by 1:30 telling my husband I just needed to rest for an hour. Next thing I know it's 4:30 in the afternoon. Got myself out of bed and was back in by 9pm. Today I am still tired but had to go to work. Some days I have energy…..others I just want to sleep. I am not depressed so I can't blame it on that.

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Replies to "Hi Irene5, I am asking anyone at this point if they had fatigue as a major..."

Funny you say that – and not funny ha ha. I had just retired from 43 years of teaching and the doctor thought, perhaps, I was depressed. I guess that’s just a go to when people are tired. I was lucky a family member is a doctor and sent me for a CT scan. The fatigue is overwhelming as I am sure you know. I do know that the UMass doctors stress having a very good and nutritious diet. Hugs and prayers – it is frustrating because you are darned if you do and darned if you don’t! And there is no definitive answer. You have to do what is best for you and your family.

I had Mac and Bronc. for seven years before I started treatment. The first three or four years I was fairly normal but then the fatigue became extreme. I went on treatment but began to lose my hearing and came off the meds. Since then, I live with daily fatigue. Some parts of the day I can barely do anything, especially in the mornings. I've lost 20 pounds and look gaunt. But there is usually some part of the day when I'm less tired and can run errands and see friends. My scans show slow advancement of the MAC but I think the bronchiectasis has gotten worse. Fatigue, I've been told, is a primary condition of the disease. I am using a nebulizer with a saline solution to help clear my lungs daily. I find it difficult to do, being short of breath, but I do my best and it does help. I also have energy drinks handy and carry one with me on errands. I do not regret my decision to wait a long time before trying the drugs. I think the feedback on this forum is it's an individual decision…either way you are taking a chance.

Are you on any medications at all. Is your sputum clear. Maybe some type of nebulized medication would help??

@src3acs Hi there! I share your frustration and amazement at how much sleep I require! My poor husband never knows how to plan for anything!