1. < MAC & Bronchiectasis

extreme constant fatigue

Posted by lilianna @lilianna, Sep 7 12:01pm

Has anybody experienced constant fatigue? I have bronchiectasis and have been treated for MAC. I used to have days of fatigue but recently it is every day and constant. I wake up, do the airway clearance, and then it comes again. I drag through the day, force myself to do things and live but I really have to lie down multiple times a day. My family doctor checked blood (fine), vit d3 (70 so OK, before was 40), magnesium (fine), and vit B12- low -started taking 1000mg every day. I eat healthy, take vitamins but Istill feel so miserable and unable or willing to do anything. My eyes are closing as soon as I sit down. I know from this forum it can be BE or from the meds (azythromycin, ethambutol and clofazimine the last 16 months). I used to have better and worse days before but since the time I had a viral infection in July it got so much worse. If you fell or felt the same what did you do? Thank you for your thoughts.

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celia16 | @celia16 | Sep 11 7:42am
In reply to @lilianna "When I talked to my doctor complaining about fatigue she walked me if I snore. Honestly..." + (show)
@lilianna

When I talked to my doctor complaining about fatigue she walked me if I snore. Honestly I don’t know, may be I do. But I think it’s the meds. My immunologist ordered immunoglobulin M and G with subclasses and unfortunately M is ver low and G subclass 2 is very low. I will see my ID doctor next week and will discuss all this. I also got my first vit12 shot. In the meantime I do things and rest, and rest again.

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You can inquire about a sleep study to measure how you’re breathing at night, but to get a quick gauge on snoring, you can get the app Snore Lab. It records your sounds throughout the night and provides a chart of any snore sounds. You can listen to any sounds you’ve made during the night. I think there’s a free version of it available.

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lorifin777 | @lorifin777 | Sep 13 7:42am
In reply to @kwi "I’ve had two periods of fatigue similar to yours. The first one was a year and..." + (show)
@kwi

I’ve had two periods of fatigue similar to yours. The first one was a year and a half ago. For a couple of months I was constantly laying on the couch, often sleeping. I’d cook, go lay down. Load the dishwasher, go lay down, sleeping a lot. After a couple months, I realized that it probably the medications I was on for a heart arrhythmia. I saw my cardiologist and he switched me from metoprolol to a different med. Helped so much. These past few months I’ve been experiencing being so very tired. What I didn’t get done in the morning, didn’t get done until after a two hour nap in the afternoon, if then. I hadn’t had a change in anything and finally dropped off a sputum sample for the pulmonologist. My results came back with heavy growth of Haemophilus influenzae. So he has put me on a 10 day antibiotic (not azithromycin).
Otherwise, I’m not receiving treatment my bronchiectasis or mac other than nebulizing 7% saline and doing airway clearance.

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What is saline therapy?

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kwi | @kwi | Sep 13 10:48am

Saline therapy is using a nebulizer to inhale 7% saline (comes in little vials). It helps thin mucus so easier to expel and the saline in your lungs helps make them not as hospitable to bacteria. With bronchiectasis, you are susceptible to many types of bacteria if not careful.

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dkelban | @dkelban | 3 days ago

I have fatigue and lightheadedness everyday. Severity varies. Does anyone have my pattern: fatigue is most often worst in mid-afternoon?

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1 reply
lilianna | @lilianna | 2 days ago
In reply to @dkelban "I have fatigue and lightheadedness everyday. Severity varies. Does anyone have my pattern: fatigue is most..." + (show)
@dkelban

I have fatigue and lightheadedness everyday. Severity varies. Does anyone have my pattern: fatigue is most often worst in mid-afternoon?

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You probably have seen my post from September. When I asked everyone said it’s meds. I am still taking them but somehow that terrible constant fatigue comes from time to time only now. Are you on any meds? I don’t know what changed. I suspect 16 days of prednisone when I was sick in July could affect me that way. I see an immunologist and she checked my IgG levels- results were much below norms so I started taking IgG supplement and metavitB12 shots once a month since it was very low as well. My tests will be repeated mid January. But the fatigue is not my issue at this point. It looks like it hits out of the blue.

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dkelban | @dkelban | 2 days ago

Hi. Thanks for replying. I've been sick for a year. My symptoms were sjogrens and antibodies were rheumatoid. Plaquinil helped the sjogrens dryness a lot, but doesn't do much for fatigue. I also take tramadol (Ultram), a milder and safer opioid. That eases the fatigue, lightheadedness, and the blues, a good deal, but nothing really gets rid of the autoimmune fatigue. Best wishes to you.

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1 reply
lilianna | @lilianna | 2 days ago
In reply to @dkelban "Hi. Thanks for replying. I've been sick for a year. My symptoms were sjogrens and antibodies..." + (show)
@dkelban

Hi. Thanks for replying. I've been sick for a year. My symptoms were sjogrens and antibodies were rheumatoid. Plaquinil helped the sjogrens dryness a lot, but doesn't do much for fatigue. I also take tramadol (Ultram), a milder and safer opioid. That eases the fatigue, lightheadedness, and the blues, a good deal, but nothing really gets rid of the autoimmune fatigue. Best wishes to you.

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I am sorry for you. With fatigue, life crawls from day to day. My thoughts are with you

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1 reply
dkelban | @dkelban | 2 days ago
In reply to @lilianna "I am sorry for you. With fatigue, life crawls from day to day. My thoughts are..." + (show)
@lilianna

I am sorry for you. With fatigue, life crawls from day to day. My thoughts are with you

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Today was typical: wanted to play guitar, did a few not taxing chores and got a hair. By 2-3 PM... Rather lay down for a nap. I was never this way till I entered autoimmune world.

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dkelban | @dkelban | 2 days ago

Meant to type" got a haircut".

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deb2230 | @deb2230 | 2 days ago

I also feel tired more than ever before. I need to sit down often and just fatigued in general. I force myself to continue my daily routine and go to the gym but it takes more effort than ever before.
I have BE and MAC , no cough. Was diagnosed in 2023 and NJH took a watch and wait approach I do ACT and all the other precautions. On my last appointment my CT had not improved and I started the Big 3 last month.
I also developed some hives that come and go and are very itchy and painful. They appeared before I started the antibiotics. So many unexplained symptoms

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