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src3acs
@src3acs

Posts: 12
Joined: Feb 26, 2018

Extreme fatigue

Posted by @src3acs, Mon, Feb 26 9:43am

Good Morning, I am new here so this may have been discussed before. I was diagnosed with MAC in 2012 after I was diagnosed with breast cancer. I had a biopsy and lung wedge resection…both confirmed the MAC. In 2015 I had a bronchoscope done which again confirmed the MAC and bronchiectasis. I have seen a Pulmonologist, infectious disease and my primary care doctor. Everyone seems up in the air whether to treat or not. They seem to be leaving the decision up to me. I don't have a cough, I do have some shortness of breath occasionally but I am always tired. No matter how much I rest or sleep…..I am tired and sometimes exhausted after minor activity. Is fatigue a main symptom of the disease. Would treatment help my fatigue or make is worse. Thank you!

REPLY

Hi @src3acs, I, too, was diagnosed with bronchiectasis and MAC over 3 years ago. I have not taken any drugs for MAC (there is no effective drugs for bronchiectasis). I don't know for sure if I'm still infected with MAC. But because my last chest X-ray indicated improvement in my lung conditions, I assume I'm no longer infected. Since there is no cure for bronchiectasis, the best we can do is to manage it in order to slow down the progression of the disease. I have not had any symptoms of shortness of breath or fatigue. Not even when I was first diagnosed. In fact I'm still physically very active, playing tennis 2-3 times a week without any of these problems. I'm not a doctor. But I suspect that the shortness of breath you are experiencing could cause the fatigue because of lack of oxygen in your blood. Is it possible that you might have other issues with your lungs besides bronchiectasis and MAC? Have your doctors looked into that possibility?

Liked by src3acs

Hi there…thank you for responding. I have had a PET scan, CT scan every year. Had a bronch….blood work and had my heart check. Only MAC and Bronchiectasis results. My fatigue is far worse than my shortness of breath. My husband is convinced that my SOB is from the MAC and wants me to get treated. The doctors are usually ready to treat then my CT doesn't show change so they say…. "Well you can put off the treatment if you want to". I'm just confused. Do I or don't I need treatment. And….my main questions, is fatigue a big part of MAC? I understand you aren't a doctor. I guess I am venting and asking questions at the same time. Thank you 🙂

@src3acs I suppose just because I don't have the problem with shortness of breath, it doesn't mean other people who have been diagnosed with MAC don't share your experience. Let's hope others in this group can provide more information on that front. When I was first diagnosed with MAC, I was also given the option of going on the drug treatment or not. After considering the pros and cons of the drug effects on the infection as well as on my body (other organs), I decided to wait and see. My pulmonologist agreed with me. Since the initial diagnosis, I have had chest X-rays and a CT scan. The results point to improvement. As a result my doctor thinks we should continue the wait-and-see path. There are so many people in this group who have the same diagnosis as you and me. Let's hope that there are others who also share your symptoms and are able to provide you with more reassuring answers to your questions.

Liked by src3acs

Thank you again for they response. I only had the MAC in my right lung until 2016 my CT scan showed some MAC in my left lung. Since then no change. No improvement either. Ugh……just not sure what to do. I hope you continue to see improvement!

This is a tough one! In reading the other posts I ran across “ you can put off treatment if you want to.” That is a pretty standard answer when your symptoms are shortness of breath and extreme fatigue. Add loss of 18%body weight for me. The bottom line is that treatment is inevitable. If you wait – maybe – just maybe there will be a less toxic treatment. The reason many doctors leave treatment up to the patient is because the treatment is grueling for most. I have been on it three times and always have to be taken off the meds. Some people are able to tolerate them. Good luck with your decision.

@src3acs I feel for you. It must be very frustrating that you constantly feel tired and can't do things that you enjoying doing. I sure hope you'll eventually be able to find the right treatment for you and start seeing some improvement.

Liked by src3acs, brigby

I also have sudden waves of fatigue and just general weakness. I've only been on meds for 3 weeks so hoping my body adjusts soon. I had been coughing almost continuously but that is beginning to decrease somewhat. Making the decision to begin treatment is personal. As I said, it seems to be working for me. Good luck with your decision.

Mary

Liked by heathert, brigby

Hi Mary1944, did you have the fatigue before treatment? I am trying to determine if my fatigue is a symptom of the MAC.

@src3acs

Hi there…thank you for responding. I have had a PET scan, CT scan every year. Had a bronch….blood work and had my heart check. Only MAC and Bronchiectasis results. My fatigue is far worse than my shortness of breath. My husband is convinced that my SOB is from the MAC and wants me to get treated. The doctors are usually ready to treat then my CT doesn't show change so they say…. "Well you can put off the treatment if you want to". I'm just confused. Do I or don't I need treatment. And….my main questions, is fatigue a big part of MAC? I understand you aren't a doctor. I guess I am venting and asking questions at the same time. Thank you 🙂

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Hi @src3acs I definitely had shortness of breath and fatigue with my MAC, if I did housework I had to have a rest every 10 mins. It was a constant shortness of breath, just as bad when I started my walk to when I finished, no puffing just feeling short of breath. It has gone now that I have been on the meds and the MAC has reduced. If it is really bothering you and your ct scan shows alot of MAC talk to your dr about it. It is always a difficult decision. All the best.

I know you did not ask me this question but exhaustion was one of the symptoms I had prior to treatment. The exhaustion has never improved for me, unfortunately. When I did the research study I explained that to them as well because it is not the regular kind of tired.

Liked by erawl

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.

@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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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.

Liked by tdrell, src3acs, brigby

@src3acs, Hi there, and welcome to our group. YES! MAC & Bronchiectasis definitely cause extreme fatigue. I combat it with .05 mg of Adderall, (I have ADD) I am prescribed 20 mg, but take only a quarter of the dose and I sometimes use ginsing with royal jelly (bee pollen) that comes in the little bottles. That gives you stamina to go all day without feeling hyped up. The days that I don't use these are spent on the couch all day. My spirit is rearing to go, but the body says "absolutely not". The first important thing I can tell you is; it is crucial that you see a doctor that knows a great deal about this disease. Most doctors are 'old school' and follow the same course of treatment. You also need to see a good Infectious Disease doctor. I was diagnosed in 2005 with MAC. (I had bronchiectasis also, but was never told that. It came up in old dr. reports that went back to 2001.) The doctor wanted me on the BIG 3 antibiotics, but I opted not to. I made that decision after getting a second and third opinion. Plus, I did my homework and found that the drugs can be toxic and hard on your other organs and only had 50% chance of working and that despite treatment; the mac comes back later eventually in many people. After refusing the usual treatment; I was put on Azithromycin and Ciprofloxacin for several months. That knocked the mac down to where I was no longer sick. I should have been routinely tested since 2005, but due to my ignorance and doctors not being on the ball, I was not tested again until 2013. During that eight years I was not treated or tested; my lung function slowly deteriorated. I believe that was due to bronchiectasis. I went to the Mayo Clinic in Jacksonville, Fl. where my doctor there had a different way to treat MAC. He put me on monthly doses of alternating antibiotics. I would do 10 days of ciprofloxacin one month and then 10 days on Doxycycline. I did that cycle for three years and I saw improvement in S.O.B. and no coughing. Today, I have good days and low energy days. I do not cough. My rate of decline is very slow, so am hoping we are slowing down the progression of bronchiectasis. Because this is getting long, I will start a new reply to you about getting treatment.

Liked by tdrell, Jen_b, Carolyn

@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis. That is what makes it so frustrating for us patients. One thing for sure is, you must arm yourself with as much information as you can about it. That way you know what questions to ask and also things you can do to help your situation. I have been on this site since 2016. I have seen one person come back on here and say that she has gone through the Big 3 antibiotic regimen and is mac free and has been for years. We can speculate that others got better also and just left the site. I have asked that those who are concluding their treatment to please check back and let us know how they are doing. They can be the beacon of hope to others. @irene5, had once said that she wishes she had gotten the Big 3 antibiotics sooner because of lung deterioration. (that was you wasn't it Irene?) I cannot say for sure that my delay in a regimented treatment didn't cause my lungs to get to the point where they are at now, which is very low lung function. Please do not panic or get depressed because of your diagnosis. Everyone's experience with this is different. For example: look at @ling123, she is proof that we can have this disease at varying levels. For some it is a minor impairment, for others it can be deadly, and most of us are somewhere in the middle. There is a lot of good information on this site about dealing with this disease, how you get it, how you prevent re-infection, etc. Medical sites like Mayo Clinic, John Hopkins, and National Jewish Health are also good sources. It is important that you do the work to learn all that you can about. We are here for you!

Liked by heathert, Jen_b

@windwalker

@src3acs, Hi there, and welcome to our group. YES! MAC & Bronchiectasis definitely cause extreme fatigue. I combat it with .05 mg of Adderall, (I have ADD) I am prescribed 20 mg, but take only a quarter of the dose and I sometimes use ginsing with royal jelly (bee pollen) that comes in the little bottles. That gives you stamina to go all day without feeling hyped up. The days that I don't use these are spent on the couch all day. My spirit is rearing to go, but the body says "absolutely not". The first important thing I can tell you is; it is crucial that you see a doctor that knows a great deal about this disease. Most doctors are 'old school' and follow the same course of treatment. You also need to see a good Infectious Disease doctor. I was diagnosed in 2005 with MAC. (I had bronchiectasis also, but was never told that. It came up in old dr. reports that went back to 2001.) The doctor wanted me on the BIG 3 antibiotics, but I opted not to. I made that decision after getting a second and third opinion. Plus, I did my homework and found that the drugs can be toxic and hard on your other organs and only had 50% chance of working and that despite treatment; the mac comes back later eventually in many people. After refusing the usual treatment; I was put on Azithromycin and Ciprofloxacin for several months. That knocked the mac down to where I was no longer sick. I should have been routinely tested since 2005, but due to my ignorance and doctors not being on the ball, I was not tested again until 2013. During that eight years I was not treated or tested; my lung function slowly deteriorated. I believe that was due to bronchiectasis. I went to the Mayo Clinic in Jacksonville, Fl. where my doctor there had a different way to treat MAC. He put me on monthly doses of alternating antibiotics. I would do 10 days of ciprofloxacin one month and then 10 days on Doxycycline. I did that cycle for three years and I saw improvement in S.O.B. and no coughing. Today, I have good days and low energy days. I do not cough. My rate of decline is very slow, so am hoping we are slowing down the progression of bronchiectasis. Because this is getting long, I will start a new reply to you about getting treatment.

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Would you ever push for Cleveland Clinic? I am at the University of Michigan but could be old school.

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