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Fatigue with NTM
This is just a random comment but something I thought worth sharing at group level: I keep reading comments by those in this group (and similar groups) about being “asymptomatic” but with fatigue, sometimes extreme fatigue. I was listening to an NTM discussion recently and the doctors made the comment that fatigue is one of the most frequent systemic symptoms (along with weight loss), and the systemic symptoms are the ones most reflective of the degree of infection, more so than say coughing. I thought this was an extremely interesting comment given the way so many patients view being “symptomatic”. I think part of it is lung disease is generally associated with coughing, breathing challenges, etc. And fatigue can be a little nebulous, certainly for any woman post-menopause. But certainly for those evaluating whether/when to treat NTM, I think it is important to recognize the significance of the systemic symptoms and not think that because one doesn’t have a cough or SOB that one is “asymptomatic”, particularly where one is experiencing fatigue, and certainly where one is experiencing extreme fatigue. Hopefully people’s doctors are flushing this out with them, but I see the comment being made by fellow patients so frequently I thought it deserved a shout-out.
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@jessed I think you might be interested in the "Spoon Theory" of energy conservation:
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
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2 Reactions@sueinmn thank you Sue. I liked the examples of how people prioritized and planned their days of have to, need to, want to and gave themselves grace and rest stops along the way. I wanted to get some mums today and I did. I was grateful my husband Ray had made dinner and got our house guest settled in.
Suggestions from you and the group are insightful and inspiring. Good night
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2 Reactions@kathyjjb thx for info. I will explore further. Good night. Jessed
@clynnp Just a heads up: This morning, I received a PM from someone that is 1 week into the NMN and is more tired. Sure enough, if the dosing/timing is not optimum, this can be a side effect. I did read online that it typically clears up in 1-3 weeks, but unsure if that's always the case. I've always been hypersensitive to medications-so probably supplements as well. I started with 150 mg versus the recommended 300 mg and did not experience any negative symptoms. Last week I increased the dose to the 300 mg and have noticed I am sleeping longer and have mild heaviness to my legs (not enough to keep me off the treadmill), so I'm back on the 150 mg as of today. The silver lining is, it must be doing something if the increase in dosage initiated a side effect that I was unaware of. It's also best to take morning or mid-morning.
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1 Reaction@kathyjjb That's interesting! I too am very sensitive to medications. If I decide to start taking the NMN, I will definitely go with the lower dose. Thank you so much for the additional information.
@jessed you're welcome. It's very interesting.
I’m new to the diagnosis but have had this for several years. NTM avium aka MAC
Needless to say the combo of antibiotics scare me.
I’m so happy to have found this support group.
Thank all who contribute to it
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2 Reactions@judyvee Can you tell us more? Is the infection severe (symptomatic) enough to require immediate treatment, or has the doctor suggested a "wait and watch" approach with airway clearance?