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fatigue and muscle weakeness

Posted by debminuet @debminuet, May 30, 2019

Hi Everyone,
I have been told in a casual (non appointment) conversation with a physician at the gymn 'you have to fight ie keep exercising". I seem to just drag when I dont exercise I get more than weak and so incredibly fatigued. Does anyone else get these symptoms I belive it is from the big 3 Im on. ITs hard to tell if I should rest or move (seems like rest can induce the feeling of the need for more rest) and as much as this is true for inactivtity it seems 100 times worse on these these meds?

auntnanny | @auntnanny | Jun 4, 2019
In reply to @sueinmn "@erawl I too have been on the Big 3 - starting my tenth month, still battling..." + (show)
@sueinmn

@erawl I too have been on the Big 3 – starting my tenth month, still battling weight loss, digestive issues and periodic fatigue. Yesterday I got the bad news from my pulmonologist that the latest sputum samples are still growing MAC – and sensitivity tests underway to be sure I am still on the right antibiotics, and I'll likely be seeing the infectious disease doc soon. A few weeks ago I would have been really depressed by this news and feeling sorry for myself, but…
I spent the last week working (pretty hard) with an amazing group of people, then dancing for 3 days with hundreds more. Many of the workers and dancers have serious health issues including cancer, heart issues, severe arthritis, and strokes,and a lot of the dancers were 80-90 years old. Some of the dancers had to use walkers, or lean on others, to get to the floor, but once there they were able to dance and enjoy the music. Some people whose dancing days are over just chatted and enjoyed the music.
I talked at length with a number of the people there about living with chronic, debilitating, or even terminal conditions. I spent quite a bit of time with my 51 year old friend who is battling Stage 4 stomach, esophagus & liver cancer, and is on chemo & a feeding tube, but continues to work when he can, and to help others. Sometimes he just has to leave and go rest, but it doesn't stop him, it only slows him down. Nearly all of the people I talked to shared his attitude that "Today is good, I will do whatever I can, and help however I can. Tomorrow is not guaranteed to any of us, but that's beyond my control."
That, my friends, is my model and motto for the rest of my life. I will see my doc regularly, do my meds and treatments, eat well and rest as necessary, but I WILL keep going.

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sueinmn —– thank you for your post. Very inspiring for all of us.

REPLY
Jo Ann K | @jkiemen | Jun 5, 2019
In reply to @sueinmn "@erawl I too have been on the Big 3 - starting my tenth month, still battling..." + (show)
@sueinmn

@erawl I too have been on the Big 3 – starting my tenth month, still battling weight loss, digestive issues and periodic fatigue. Yesterday I got the bad news from my pulmonologist that the latest sputum samples are still growing MAC – and sensitivity tests underway to be sure I am still on the right antibiotics, and I'll likely be seeing the infectious disease doc soon. A few weeks ago I would have been really depressed by this news and feeling sorry for myself, but…
I spent the last week working (pretty hard) with an amazing group of people, then dancing for 3 days with hundreds more. Many of the workers and dancers have serious health issues including cancer, heart issues, severe arthritis, and strokes,and a lot of the dancers were 80-90 years old. Some of the dancers had to use walkers, or lean on others, to get to the floor, but once there they were able to dance and enjoy the music. Some people whose dancing days are over just chatted and enjoyed the music.
I talked at length with a number of the people there about living with chronic, debilitating, or even terminal conditions. I spent quite a bit of time with my 51 year old friend who is battling Stage 4 stomach, esophagus & liver cancer, and is on chemo & a feeding tube, but continues to work when he can, and to help others. Sometimes he just has to leave and go rest, but it doesn't stop him, it only slows him down. Nearly all of the people I talked to shared his attitude that "Today is good, I will do whatever I can, and help however I can. Tomorrow is not guaranteed to any of us, but that's beyond my control."
That, my friends, is my model and motto for the rest of my life. I will see my doc regularly, do my meds and treatments, eat well and rest as necessary, but I WILL keep going.

Jump to this post

@erawl I am going through the same thing right now. 17 months in on the Big 3 and still growing MAC Waiting on the sensitivity testing also. Not sure what else to do right now

REPLY
america | @america | Jun 6, 2019
In reply to @sueinmn "@erawl I too have been on the Big 3 - starting my tenth month, still battling..." + (show)
@sueinmn

@erawl I too have been on the Big 3 – starting my tenth month, still battling weight loss, digestive issues and periodic fatigue. Yesterday I got the bad news from my pulmonologist that the latest sputum samples are still growing MAC – and sensitivity tests underway to be sure I am still on the right antibiotics, and I'll likely be seeing the infectious disease doc soon. A few weeks ago I would have been really depressed by this news and feeling sorry for myself, but…
I spent the last week working (pretty hard) with an amazing group of people, then dancing for 3 days with hundreds more. Many of the workers and dancers have serious health issues including cancer, heart issues, severe arthritis, and strokes,and a lot of the dancers were 80-90 years old. Some of the dancers had to use walkers, or lean on others, to get to the floor, but once there they were able to dance and enjoy the music. Some people whose dancing days are over just chatted and enjoyed the music.
I talked at length with a number of the people there about living with chronic, debilitating, or even terminal conditions. I spent quite a bit of time with my 51 year old friend who is battling Stage 4 stomach, esophagus & liver cancer, and is on chemo & a feeding tube, but continues to work when he can, and to help others. Sometimes he just has to leave and go rest, but it doesn't stop him, it only slows him down. Nearly all of the people I talked to shared his attitude that "Today is good, I will do whatever I can, and help however I can. Tomorrow is not guaranteed to any of us, but that's beyond my control."
That, my friends, is my model and motto for the rest of my life. I will see my doc regularly, do my meds and treatments, eat well and rest as necessary, but I WILL keep going.

Jump to this post

Now that inspiration!!!

REPLY
1 reply
america | @america | Jun 6, 2019
In reply to @america "Now that inspiration!!!" + (show)
@america

Now that inspiration!!!

Jump to this post

We all need each other and encouraging one another is one of the greatest tools to keep us going. I am blessed by your courage!!! Hugs

REPLY
debminuet | @debminuet | Jun 12, 2019
In reply to @migizii "I’m so sorry that you have lost your dad and have to face this challenge on..." + (show)
@migizii

I’m so sorry that you have lost your dad and have to face this challenge on many levels alone. You are in my thoughts each and every day.

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Thankyou Jennifer, When I read your post I felt relief that someones out there and notices and to know you are thinking of me is even though I dont know you is soothing. Thankyou 🙂

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