Extreme fatigue with MAC

Irene, I have no idea of what stage of sarcoidosis I have. Has this affected him physically and emotionally? Thanks, Jane

Yes, hugely! Had we known then what we know now, I would have had him apply for disability. He retired in 2006 at age 60 because he could barely work three days a week. (Guidance counselor) We didn’t know there were stages to sarcoid either. It has affected everything for us. And I have MAC. Tis a lovely retirement- not! The odd thing is that our neighbor got sarcoid too and it affected different organ systems for him. He looked like he had AIDs. He (our neighbor) did receive psychological help with it. He was only in his forties. My husband’s quality of life is poor to say the least. It is sad. He says a lot more “wordy dirds” now because he is so frustrated. Breathing, coughing, eating, - all are difficult! And then he feels bad because he can’t help me. No fun going on- but every day above ground is still ok by me!

Hi ain’t nanny, I think we all feel fatigue and exhausted with Mac. And sleeping is always difficult for me too. But have you tried melatonin? It works for me most of the nights and then again sometimes it does not. But it’s pretty safe. I would wake up every morning at 4:am or 5:am and that’s it. I am 63 and my mind feels like 40 but my body feels like 80. So hang in there it will get better. Rita

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!!

Hi, I'm new too and getting going with the learning curve. Yes fatigue certainly is a symptom more so when other medical issues are present. Ive found that building up on exercise and moving around helps. If you are positively diagnosed I would go on it in a jiff to try to nip it in the bud if you can. Take care.

@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?

@macjane Hello Jane. No, MAC and sarcoidosis is not the same thing. Mac is an infection caused by a mycobacterium (bacteria). Sarcoidosis, is thought to be an autoimmune disease that causes granular tumors anywhere in the body; typically in organs and lymph nodes. You mentioned NOTseeing mac indicated after your pulmonary test. That is because pulmonary tests test your lung function, not what is causing your issues. It sounds like you need to take more serious charge of your medical care. You may not even have mac, but only sarcoidosis. Ask for hard copies of all of your medical records for your own personal files. Do you know if your physician's practice offers a 'patient portal' where you can get online and read your medical records?

@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.

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.

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