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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@lilianna

For me antibiotics helped with cough. I stopped the nonstop coughing so bad that I was gagging. You will find relief when you start .I wish you the best. Stay strong waiting for the treatment. When I started the treatment my ID doctor made me start all three meds at the same time. 10 days later I had an adverse reaction and ended up in hospital for four days. When I restarted meds I went one antibiotic at a time with a week, 10 days space and it was the right way to adjust. I hope your id doctor is more couscous than mine was.

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I wondered about taking all three meds at the same time. It didn't make sense if I wanted to understand which ones would cause which reactions if any. My ID told me I would have to try different ways to see which worked best for me and that's what I'm doing. I started about three weeks ago and now I'm on all three still trying to decide which way to take them. Thanks to support groups like this I learned even before I started taking the meds that taking one at a time at first was the way to go. My main issue is fatigue which I fight and push through daily.

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I had severe fatigue due to MAC in December 2022. I cant work at all and felt my legs weak in that month. I started peptide therapy in March 2023 and it helps with my fatigue and energy a lot. I heard peptide helps with cancer and auto immune disease. For normal person without autoimmune diseases like me, I just take it with my antibiotics treatment to reduce toxicity from antibiotics. I am taking three medication + inhaled amikacin.

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@helen1000

I had severe fatigue due to MAC in December 2022. I cant work at all and felt my legs weak in that month. I started peptide therapy in March 2023 and it helps with my fatigue and energy a lot. I heard peptide helps with cancer and auto immune disease. For normal person without autoimmune diseases like me, I just take it with my antibiotics treatment to reduce toxicity from antibiotics. I am taking three medication + inhaled amikacin.

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Hi Helen . I wonder who prescribes the peptide therapy for you. I am glad for you that you feel it works. I have a sputum sample sent to NJH every two months and it does not show MAC so I think the fatigue is from the meds- my body is tired.

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@lilianna

Hi Helen . I wonder who prescribes the peptide therapy for you. I am glad for you that you feel it works. I have a sputum sample sent to NJH every two months and it does not show MAC so I think the fatigue is from the meds- my body is tired.

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Yes medication indeed makes our body tired. But before I took medication, I felt really weak and tired, and this was totally different from my previous fatigue. I felt I was not able to recover from the tiredness. I think it also comes from lower lung function due to lung infection.

Many online vendor provides peptide therapy. I can text you my doctors name.
.

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@helen1000

Yes medication indeed makes our body tired. But before I took medication, I felt really weak and tired, and this was totally different from my previous fatigue. I felt I was not able to recover from the tiredness. I think it also comes from lower lung function due to lung infection.

Many online vendor provides peptide therapy. I can text you my doctors name.
.

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What is peptide therapy?

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I just wanted to add a couple of things. I know nothing about the lung condition. Did you notice how low your B12 was? Did the doctor say if you should take Sublingual, instead of regular tablets? I ask that, because some people don’t absorb it well, so injections and sublingual are the only options. B12 deficiency can cause significant fatigue. I had it and many symptoms relieved after months of treatment.

Did they check your thyroid? Hypothyroidism can cause severe fatigue. Mine is treated and I no longer have fatigue.

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@celia16

I just wanted to add a couple of things. I know nothing about the lung condition. Did you notice how low your B12 was? Did the doctor say if you should take Sublingual, instead of regular tablets? I ask that, because some people don’t absorb it well, so injections and sublingual are the only options. B12 deficiency can cause significant fatigue. I had it and many symptoms relieved after months of treatment.

Did they check your thyroid? Hypothyroidism can cause severe fatigue. Mine is treated and I no longer have fatigue.

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Thank you celia16. Yes my thyroid was checked and it’s ok. Yes my bit B12 is low and I am going to get injections. I hope it helps in a few months.

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I may be a rare bird but my pulmonologist requested a sleep study to assess whether that caused my extreme fatigue. The study found that my oxygen sats were dropping a lot during sleep. He prescribed 2L of O2 for sleep and it has changed my life! I feel almost normal again. Just a thought.

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@afieldhuff

I may be a rare bird but my pulmonologist requested a sleep study to assess whether that caused my extreme fatigue. The study found that my oxygen sats were dropping a lot during sleep. He prescribed 2L of O2 for sleep and it has changed my life! I feel almost normal again. Just a thought.

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You are probably not so rare - remember, we all have compromised lungs when we have MAC/NTM & Bronchiectasis. Some of us are also "lucky" enough to have Asthma, COPD, Sleep Apnea or other conditions as well.
I will suggest this to my PCP if my fatigue gets worse, since I apparently don't have any lung infection at this point. I cannot produce enough sputum for a sample.

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@sueinmn

You are probably not so rare - remember, we all have compromised lungs when we have MAC/NTM & Bronchiectasis. Some of us are also "lucky" enough to have Asthma, COPD, Sleep Apnea or other conditions as well.
I will suggest this to my PCP if my fatigue gets worse, since I apparently don't have any lung infection at this point. I cannot produce enough sputum for a sample.

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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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