Fatigue...

[Dustypye]

I know I'm probably preaching to the choir on this, but, I guess I just need to know I'm not the only one. I'm tired, All The Time. I wake up tired and go to bed tired. I honestly can't remember a time when I wasn't exhausted. It's like I've been running a marathon for almost two years and there's no finish line in sight. And, if I push myself too hard with too much physical activity, my hands shake and I'm wiped out for at least another day. That's one of the worst parts of this whole disease. I've always been a hard worker, and I feel like others are judging me, as if they think I'm lazy or something.

Usually by Wed., my mind is worn out for the week and I start forgetting things (that's a whole other post) and by Thursday my body is worn out. I still work some weekends and sometimes put in 10 or 12 hour days when needed. Lately I've been having every single day taken up with work or volunteer work on the weekends. It's been weeks since I've had just one day off to sleep and do nothing.

[Whomikey]

Good day Dustypre , OmG. I am the same way. I am still working full time by he fourth day I am sooo fatigue and by day five I am drain. I am only stage 3b. So yes you are NOT alone. I think we all feel this way. My PCD kinda over looks its. But he does live my life and no one truly doesn't understand unless they have this CKD. Fatigue is a BIG part of our LIVES. I am not a lazy person. Never have been. But this fatigue is kicking my butt. Best wishes to you. Keep you chin up my friend as we battle this together. Have a good day.

[orangecity41 NKF Ambassador]

I am at stage 3 and also at times feel fatigue. I read that it could possibly be caused by lack of hormone produced by the kidneys for the parathyroid. There could be other factors of CKD also.

[Frankie24]

Hi Dustpye,

Hi, I am stage 4, GFR 21, with hereditary PKD and I also work full-time with a part time job on the side. I am also exhausted all the time. I cannot wait to dive into bed at the end of the day. I recently decided to do some volunteer work as well, I will be interested to see how that works out. I have just tried to take care of myself and accept that it comes with the disease, then it doesn't seem to bother me so much, well, I guess I just try not to dwell on it which helps. My weekends use to be full of activities, now I am happy to go or not to go on the weekends, some weekends it is nice to just chill and give my body a rest. I sure other's will give more technical info, but that is just my personal experience. Take Care !

[hazel-hearty in reply to Frankie24]

Good Job! I am 74, retired and also at stage 4 and I tire easily but I want to keep away from dialysis as long as I can so I follow this practice: cook all meals at home, exercise daily (ride my bike, yoga, yogalatis, and Barre classes. The other is I mediate twice a day, my husband and I enjoy going to different activities: concerts at the library and/or parks, art openings, canoeing when the weather permits. Always take time to rest. Some days I do not ride my bike or go to the gym and the next day I am ready to go. I also do laundry, vacuum, etc. Enjoy life. I am hoping that they develop stem cell. Wouldn't that be glorious!

[hazel-hearty in reply to Frankie24]

Sounds like you never take time for yourself. Remember you are the most important person in this equation. Life is great and must be enjoyed. Never give up on yourself. I was DX with this aggravation, CKD, in 2005 at that time my GFR was 28 and today it is 15 but I keep going however on days that I am feeling under the weather I rest and do little things at home. A suggestion from this 74 Grandmother who was always busy doing now today I learned to rest: mediate, ride my bike, cook, listen to relaxing music, etc. Take the time for yourself and the world will not fall apart. You are important. Get involved with something you are passionate about for me it is "Saving the Earth" by being kind to our Environment. When my husband and I canoe we bring a garbage bag and collect trash from the bayous, lake,...The best to you

[Hidden]

Now isn't the time to worry about what others may think. Now is the time to take care of YOU...and if you need to let go of some of the activities to feel better, do it. Learning to take care of myself was the hardest thing to do but you can do it! Hugs and prayers!

[KidneyCoach NKF Ambassador]

If you're doing in-center dialysis remember that 12 hrs per week is the "bare minimum" of treatment to keep you alive. Also, your kidneys produce a hormone which tells the bone marrow to make red blood cells. When your kidneys aren't working then you may be anemic. Ask about your hemoglobin as this will indicate if you're anemic or not. They may be giving you injections, either in the arm (70% more effective) or through the bloodlines while on dialysis commonly known as EPO, Aranesp or Mircera. This replaces the hormone and helps stimulate red blood cell production. In connection with RBC production are the iron stores and available iron. If iron levels are low then they cannot help with RBC, and v.v. the RBC cannot help with available iron and iron stores. They work hand in hand so they may also need to be giving you iron either on a regular basis or just a boost once in a while. Ask about your iron. Another critical issue is Vit D. Many doctors don't follow this as they should but its critical to bone health. If any of these things are lower than normal it will impact on how you feel i.e., fatigue etc. That being said, more dialysis is better. If they can get you an extra treatment every week you'll feel much better. When I went from conventional dialysis (12 h/week) to nocturnal home hemo I was absolutely gobsmacked at how I felt. I even went out and found a job and began working near full-time. One of the things that makes most people feel "wiped out" is taking off fluid too quickly and having a high blood flow (pump). Many dialysis consumers on conventional treatments will run a blood flow of 450+ and this makes it difficult on the body to adjust to the fluid removal and its hard on the access and heart. I currently run 200-250 and length of time is 6-8hrs 4-6 times per week. This means I get 2-4X more time in than the conventional treatments so yes I feel tremendously better doing what I'm doing than if I were doing in-center. Some centers do offer nocturnal treatments. You may want to ask about home dialysis. I hope this helps you. Blessings

[EndStageRenal]

Great post, MysticalUnicorn! I'm end-stage from PKD and am currently doing 3.5 hrs. of dialysis every M,W,F in-center. When they take more than about 2.5k of fluid I tend to have issues with cramps overnight but otherwise I feel pretty good. I run at 450 ml/minute for 3.5 hours. I've considered home hemo but I'm afraid to turn my wife into my nurse.

Tell us more about home hemo.