Extreme fatigue

Posted by src3acs @src3acs, Feb 26, 2018

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!

@prelle1

I was so tired that I couldn’t walk across the room in 2008. Went on the 3 meds and seemed wonderful . Now the fatigue is back and I think I am going to try the meds again. I just don’t want to live with this quality of life. But then again I do want to live!!

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@prelle1 Hi. All doctors would cringe at what I am about to say, but here goes. The fatigue for me was so bad that I spent days upon days on the couch totally unable to get up. I was missing out a lot in life and social functions. So, I pleaded, believe me, I had to plead; to get a script for Adderall. Adderall is a stimulant (speed) prescribed for those with ADD, attention deficit disorder, which I also have. I told my local doctor that I felt like life wasn't worth living if I cannot get up and be a part of it. Thankfully, he understood and prescribed it. I take only a very small amount (.125 mg) a day out of a 20 mg tablet. That equates to a small crumb, but it is enough to help me to be functional again. As an added benefit, it helps give me the energy to move my flattened diaphragm and my oxygen levels have also improved. This is not a drug that can be safely used by everybody. It is not suited for those with high blood pressure, heart issues, or addictive personalities. Another thing I found useful to help with energy is 'ginsing with royal bee pollen'. This can be purchased at an asian market or online. You would need to run it by your dr to make sure it is ok for you to take. I feel like nobody but us with mac understands how dibilitating this relentless fatigue can be. Also, exercise is critical. The more you do, the better you will feel. Exercise can be just walking 20 mins a day (to start). I feel for you, I really do. I hope you can figure out a way to improve on getting going again. Mentally adjusting yourself can be helpful too. Just keep telling yourself that you are NOT going to be 'that' sick person any more. That is what really turned the tide for me. Others on this site have turned their health around, with determination; you can too. Please keep me posted on how you are doing.

Liked by heathert, tdrell

OMG!!! I UNDERSTAND TOTALLY. I thought that my time to pass out of this life had come until I found out about the side effects of these drugs. I take Rifampin, Azithromycin and Ethambutol 3 days a week. My days off the drugs are better and I try to get as much accomplished as I can.

@windwalker

@jweisser Hi Janice. Have you had a recent CT Scan of your lungs? If not, ask for it to be done at your upcoming appointment. That is the best way to get a true picture of the health of your lungs. A good pulmonoogist office should have a saline nebulizing station to help you bring up sputem for testing. Mac and bronchiectasis disease is very fickle. For some people, it can progress, & be a very serious, even life-threatening disease. But, the majority of people will have it mildly and experience 'flare-ups' (bouts of lung infection). This is a disease that you will have to keep an eye on. Please read through our past posts and visit the Discussion Board on the group's home page. There is SO much info in our conversations. Are you able to navigate this site alright?

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Thank you Terri, yes my CT Scan was recent, and the first I knew of this disease. My PA sent me to the pulmonologist for evaluation. He put me on a 10 day prednisone/antibiotic series. He also ordered a heart echo to check the valves in my heart. It just takes so long for each place to get to the testing. I don't have the echo until the 20th of this month. I assume he wants to check all things that might be causing the fatigue. I was impressed with the pulmonologist, he spent at least 45 minutes with me going over my chart and asking me questions. I guess that's why I forgot to ask if he thought this was progressive or will I stop here. The fatigue is what is my main problem right now. Once I have the echo, I may ask for another appointment with the pulmonologist. I think I need more answers. I have had fibromyalgia for years so this might be causing some issues right now.
I'm not sure I know how to maneuver the website well enough, but I will be spending more time figuring this out. thanks for your message. Janice

I by mistake found that all of the new responses each day go to my junk folder! After I discovered that I just went to the Junk folder each day and read them! Maybe yours are doing the same. It makes it quite easy to see the new responses.

@helem

I by mistake found that all of the new responses each day go to my junk folder! After I discovered that I just went to the Junk folder each day and read them! Maybe yours are doing the same. It makes it quite easy to see the new responses.

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@helem I don't know which email provider you are using. I use gmail. There is a Spam folder where some of my legit messages would go. I can also set up different sub-folders/tabs in my Inbox to separate messages into Primary, Social, Promotion, etc. From time to time, messages would go to wrong sub-folders as well. What I do is to immediately move the messages to the correct folders/sub-folders. It looks like if I do this repeatedly for a few times, the email server is smart enough to get things right after a while. The ones that fall into the Spam folder incorrectly, I have an option to click Not Spam to move them out into the Inbox. If you leave the things as they are and just open them there, they will keep going there because the email server will think that is the right place to put them.

Liked by tdrell, Margie E

@ling123

@helem I don't know which email provider you are using. I use gmail. There is a Spam folder where some of my legit messages would go. I can also set up different sub-folders/tabs in my Inbox to separate messages into Primary, Social, Promotion, etc. From time to time, messages would go to wrong sub-folders as well. What I do is to immediately move the messages to the correct folders/sub-folders. It looks like if I do this repeatedly for a few times, the email server is smart enough to get things right after a while. The ones that fall into the Spam folder incorrectly, I have an option to click Not Spam to move them out into the Inbox. If you leave the things as they are and just open them there, they will keep going there because the email server will think that is the right place to put them.

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@ling123 Great explanation!

@jweisser

Thank you Terri, yes my CT Scan was recent, and the first I knew of this disease. My PA sent me to the pulmonologist for evaluation. He put me on a 10 day prednisone/antibiotic series. He also ordered a heart echo to check the valves in my heart. It just takes so long for each place to get to the testing. I don't have the echo until the 20th of this month. I assume he wants to check all things that might be causing the fatigue. I was impressed with the pulmonologist, he spent at least 45 minutes with me going over my chart and asking me questions. I guess that's why I forgot to ask if he thought this was progressive or will I stop here. The fatigue is what is my main problem right now. Once I have the echo, I may ask for another appointment with the pulmonologist. I think I need more answers. I have had fibromyalgia for years so this might be causing some issues right now.
I'm not sure I know how to maneuver the website well enough, but I will be spending more time figuring this out. thanks for your message. Janice

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@jweisser ….sounds like your medical people are listening to you….ordering tests to narrow down the cause of fatigue….one additional and sorta easy test might be blood test…to rule out anemia…and also TSH…to see if your thyroid is hypoactive. tdrell

My PA is great about running blood tests, I can't remember all that I've had recently but I will check MY Chart where they are all listed. I will be going in to see her again very soon. I can't handle the body pain much longer. I will remember to ask her about the blood tests. I think the body pain is fibromyalgia which I've had for a long time. It comes with the weather changes plus I just had surgery on one of my eyes last week, the stress causes fibro pain too. I just want to find what is making me tired. Thanks for your interest

@ling123

@helem I don't know which email provider you are using. I use gmail. There is a Spam folder where some of my legit messages would go. I can also set up different sub-folders/tabs in my Inbox to separate messages into Primary, Social, Promotion, etc. From time to time, messages would go to wrong sub-folders as well. What I do is to immediately move the messages to the correct folders/sub-folders. It looks like if I do this repeatedly for a few times, the email server is smart enough to get things right after a while. The ones that fall into the Spam folder incorrectly, I have an option to click Not Spam to move them out into the Inbox. If you leave the things as they are and just open them there, they will keep going there because the email server will think that is the right place to put them.

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Here is a post about how to manage your emails and filter them into a folder

[Tip] Filter your Connect emails into a folder https://connect.mayoclinic.org/discussion/tip-filter-your-connect-emails-into-a-folder-1/

For anyone have issues with Connect emails going to Spam, here's how to prevent them from going to spam in Gmail.

1. Open Google Mail and click Settings > Filters and Blocked Addresses > Create a new filter
2. Enter @n1.hubapplication.com in the From field
3. Click Create filter with this search
4. Select Never send it to spam
5. Click Create Filter

If you use a different type of email client (Outlook, Yahoo, etc.), simply google "how to prevent messages from going to spam".

@windwalker

@jweisser Hi Janice. Have you had a recent CT Scan of your lungs? If not, ask for it to be done at your upcoming appointment. That is the best way to get a true picture of the health of your lungs. A good pulmonoogist office should have a saline nebulizing station to help you bring up sputem for testing. Mac and bronchiectasis disease is very fickle. For some people, it can progress, & be a very serious, even life-threatening disease. But, the majority of people will have it mildly and experience 'flare-ups' (bouts of lung infection). This is a disease that you will have to keep an eye on. Please read through our past posts and visit the Discussion Board on the group's home page. There is SO much info in our conversations. Are you able to navigate this site alright?

Jump to this post

I didn’t realize this is how the course of the illness goes. I find this site very helpful. Thank you for the info.

@jweisser

Thank you Terri, yes my CT Scan was recent, and the first I knew of this disease. My PA sent me to the pulmonologist for evaluation. He put me on a 10 day prednisone/antibiotic series. He also ordered a heart echo to check the valves in my heart. It just takes so long for each place to get to the testing. I don't have the echo until the 20th of this month. I assume he wants to check all things that might be causing the fatigue. I was impressed with the pulmonologist, he spent at least 45 minutes with me going over my chart and asking me questions. I guess that's why I forgot to ask if he thought this was progressive or will I stop here. The fatigue is what is my main problem right now. Once I have the echo, I may ask for another appointment with the pulmonologist. I think I need more answers. I have had fibromyalgia for years so this might be causing some issues right now.
I'm not sure I know how to maneuver the website well enough, but I will be spending more time figuring this out. thanks for your message. Janice

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@jweisser Janice, your dr doesn't have to dig far to figure out the source of your fatigue. It is the mac & bronchiectasis. Fatigue is a major symptom of this disease. The only way a dr can tell if your lung disease is progressive; is to follow you and have a ct scan done every 2-5 yrs. Every patient is different. For some, this disease is no more than a minor nuisance, then others, may get progressively worse, while a very small percentage lose all immunity and get consumed by organisms. Bear in mind, mac is a very slow growing bacterium. You most likely won't go downhill fast from that alone.

@terri M, thanks for the information. I'm struggling to figure out all of the symptoms and how it's going. This was my first meeting with the pulmonologist, he spent at least 45 minutes with me checking my background etc. He has also ordered a heart valve echo to see if that is OK. It just takes a long time to get all of the tests completed. I'm trying to get some exercise in thinking the fatigue might be that I'm out of shape. It's very hard to do much walking when just plain old house work wears me out, even just getting showered and dress has me puffing. The doctor showed me my lung scan and said the number of bronchiectasis things, whatever they are, was not bad so I'm wondering if there is enough there to make me this fatigued. He had me take a 10 day series of Prednisone and an antibiotic which I've taken and been done with for a couple of weeks now. My PA had me use an inhaler which seemed to help sometimes but didn't make a big difference. I'm leaning toward just being fat and lazy, and out of shape. Although I do know there is something in my lungs, I just don't know how much it's contributing to my fatigue. Thanks for your help, I'm reading as many posts as I can to try to understand what is going on with me. Janice

@windwalker ….I enjoy reading your comments about fatigue and this relentless disease. However I was surprised to see you suggesting a CT every 2-5 years……I understand you shouldn’t be exposed to too much radiation but to check the progression of this disease or hopefully to get encouraging news that the disease is receding wouldn’t you suggest biannual CT scans?

@hydrang3a

@windwalker ….I enjoy reading your comments about fatigue and this relentless disease. However I was surprised to see you suggesting a CT every 2-5 years……I understand you shouldn’t be exposed to too much radiation but to check the progression of this disease or hopefully to get encouraging news that the disease is receding wouldn’t you suggest biannual CT scans?

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Does this disease actually recede? I thought once the thingies?? were there they were with you for life. I guess I need to read more about this stuff. I don't even know what the MAC is, is that when the already vestals are compromised and become infected? OK I will go do some reading and try to figure out all of this.

@jweisser

Does this disease actually recede? I thought once the thingies?? were there they were with you for life. I guess I need to read more about this stuff. I don't even know what the MAC is, is that when the already vestals are compromised and become infected? OK I will go do some reading and try to figure out all of this.

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You are right in essence. I don’t know of a single person who has been infected who got rid of it for the rest of their lives. I beg someone to please prove me wrong on this…it can go away for awhile…meaning you can receive negative sputum cultures for a few years but everyone I have spoken with has been reinfected later. How I wish I were wrong! If anyone knows of anyone who has received treatment and went on to live 20 more years without a reoccurrence please chime in.

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