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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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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Thank you kwi. I don’t take other medications, nothing. I had sputum cultures done and nothing grew for the respiratory test. But the infection I had a month ago was parainfluenza 4 and may be I am still recovering. But I really think it’s from the MAC meds. Unfortunately I still have at least 6 months to go so I wonder if I can survive it.

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I'm very fatigued & nap almost every day now. My bronchiectasis is mild; also have MAC & will start treatment in about 3 weeks after all the screening. My docs say it's the MAC since I had mild & practically asymptomatic bronchiectasis for 10+ years til I got a chronic dry cough & then eventually cultured positive for MAC. Now I clear some thick phlegm with 2x/day saline nebulizing + smartvest. I'm really hoping the antibiotics help but I understand it's a long haul.

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@lvnl

I'm very fatigued & nap almost every day now. My bronchiectasis is mild; also have MAC & will start treatment in about 3 weeks after all the screening. My docs say it's the MAC since I had mild & practically asymptomatic bronchiectasis for 10+ years til I got a chronic dry cough & then eventually cultured positive for MAC. Now I clear some thick phlegm with 2x/day saline nebulizing + smartvest. I'm really hoping the antibiotics help but I understand it's a long haul.

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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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Thank you. My docs are at NYU Bronchiectasis & MAC program & are very up on everything but I'll be sure to discuss sequencing the start of the meds!

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@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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For kiwi, What drug did your heart doctor switch you to from Metoprolol?
Thanks

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He switched me to diltiazem CD 120 mg 24 hr. I also take flecainide which I was taking before the switch. I still feel like it’s a drain on my energy but not as much as the metoprolol.

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@lilianna

Thank you kwi. I don’t take other medications, nothing. I had sputum cultures done and nothing grew for the respiratory test. But the infection I had a month ago was parainfluenza 4 and may be I am still recovering. But I really think it’s from the MAC meds. Unfortunately I still have at least 6 months to go so I wonder if I can survive it.

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I had a MAC infection in 2020. My pulmonologist and I decided to take a watch and wait approach, so I did not take meds. My symptoms were much as you described. I was losing weight, losing hair, coughing day and night (and pulling muscles) but not bringing anything up, dark circles under my eyes, no energy. I have relied on acupuncture for various issues in the past, so I decided t give it a go. My acupuncturist took one look at me and said, "You"re depleted." I thought that was the perfect word for how I felt. Acupuncture certainly did not cure my infection, but I did feel like I had more strength, like my body was giving me something to work with, like maybe things were starting to turn around. I'm not making any recommendations, just offering my own experience.

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@lilianna
"Constant fatigue"..... oh yes! I have other autoimmune diseases and 'fatigue' is a symptom common in all of them.
In your story, I do have hope that this increase in fatigue will start to ebb, as you continue to recover from that virus. [ viruses seem to be getting bigger and badder i.e. Covid, etc ] and they do play havoc on our struggling immune systems.
During teaching sessions at the Arthritis Centre in Victoria BC, they stressed over and over the word 'Pacing", and it is so true. It is part of being kind to yourself as we adapt to the limitations that come with these disorders.
Others have shared their methods of pacing, @kwi, does the 'little bit, then lie down ' routine. I can relate! The tortoise and the hare children's story has great wisdom!
I have just completed cutting out 26 yards of fabric for baby blankets. It has taken 3 months to accomplish, but every cut is a victory. All done one stroke at a time and some days, none at all. [ now there is the sewing part, but that can be accomplished in the same manner.]
Above all, be kind to yourself. We are confronting a big adversary, and our strategies are also long-term.
Good for you to have checked out your blood work. Did you get an iron reading as well?
Continue to look after yourself.
We do the best we can and are proud of it !!
All the best to you.

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I have the same issues. Tired all the time I guess attributed to aging ( i am 76) and BE and Mac.
To get more salt in my lungs Im going to try a salt cave for 45 minutes then weekly. My doctor said there is no downside to this therapy. Trying to kill MAC!!

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