FATIGUE

[CuriousCKD]

Has anyone with stage 4 ckd been so fatigued that they could hardly put one foot in front of the other? Granted, I had some surgeries and other problems that rendered me quite sedentary, and being almost 77, I wonder if I haven’t acquired Sarcopenia, or if I’m just totally out of shape? I can walk around a half mile or thereabouts, with the aid of a walker, so I’m perplexed!

Around the house, trying to dust my floors or damp mop with a Swiffer without the help of a cane, just about does me in. I am weak as a kitten. Weaker, even! 🙄 What I would like to know is if anyone out there has been in the same situation, but has been able to get into a doable exercise routine and regained some strength? I’ve never felt so useless, and it is so depressing!

[PeaB4YouGo]

I'd be curious to know what your labs are like. With my eGFR running in single digits, if I felt like that, my doctors would have me on dialysis in a skinny minute. I'm lucky to still feel like getting up, but I hear that fatigue will slowly (hopefully) start to catch up.

[CuriousCKD in reply to PeaB4YouGo]

Thank you. I replied in detail about lab work to Bassetmommer. I hope you can hold off on dialysis. 🙏

[Bassetmommer NKF Ambassador]

You sound anemic. And that is so common with CKD. Check your hemocrit and hemoglobin on your labs. Also lack of B12, and VIt D which is also common with CKD can cause fatigue. At stage 4, your parathyroid might also be off and that might be causing the issues. Easy to check on those levels and your neph should have been checking them.

The anemia is pretty easy fix. Although I was not really feelign that off, my hemocrit and hemoglobin were getting low. Normal levels are 11.2 - 15.7 g/dL and mine was 9.4. Went and had an iron infusion and voila, I am jumping and jiving. I am stage 5.

[CuriousCKD in reply to Bassetmommer]

Thanks for your input. At stage 5, I am really happy to hear that you’ve got some good energy. Unfortunately, I’ve been anemic all my life. It was first discovered in my teens. I’ve had extensive testing by two separate blood specialists, including a bone marrow test, and the only thing they can determine is that my iron stores are low. My hemoglobin has always below normal, and one time, it was at 7. I had to have 2 iron shots. (Big owwie there!) However, my last lab work this past July indicated that for the first time, my hemoglobin was at 11.5, but then my red blood cell count went down, which is usually within normal range. I have tried to take iron supplements, but they almost completely shut down my digestive system. I got really sick from them a few months ago. I may have to ask about the infusion. I have had to get a couple of pints of blood after a couple of surgeries, in the past. My vitamin D levels are actually higher than the norm right now. Parathyroid was abnormal at 89, but calcium levels were within normal range, as were phosphorus, and potassium. My sodium level was one point below normal, but I’m not really retaining water, and I’m not on a diuretic. 😬 So frustrating….. My renal doctor was not concerned at this time about PTH….

[Bassetmommer NKF Ambassador in reply to CuriousCKD]

Just so you know that if you have a factor ( can't think of the name for it) you will not be able to absorb iron from oral tablets or food. I did pills and they did nothing because I have that issue. I had a "super" iron infusion called ferric derisomaltose (Monoferric) iron infusion. It is one and done. Takes 3 hours. Lots of precautions with it but it worked great. I have no idea what my levels are because I have not been back to the labs. I only know I have a ton more energy and went back to my water aerobics class.

[CuriousCKD in reply to Bassetmommer]

WOW! That is impressive, for sure. I will definitely ask about this procedure, and do some research on it as well. I need to go through my house and get rid of a lot of things, and I just haven’t been able to get it done, because I am so tired. If this could help me, I would be thrilled. Thank you so much for your valuable input.

[bumblebee_tuna in reply to CuriousCKD]

There is a new class of drugs for treating anemia that you might be want to look at and talk to your doctor. Look up Roxadustat. Please try and avoid transfusions....

transfusionnews.com/2019/07...

[CuriousCKD in reply to bumblebee_tuna]

I will check out the Roxadustat, and check out the link you sent, Thank you! I would like to avoid transfusions. So far, none of my doctors have prescribed anything other than Farxiga and diet.

[jodaer]

I'm exhausted daily by noon or earlier. I can only do 1 or 2 things a day. I'm not anemic but with 3 major chronic conditions, chronic random pain and some other stuff not to mention my meds it's come to be expected. I used to do a daily walk but that never helped with the fatigue either. I can't now because of pain.

[CuriousCKD in reply to jodaer]

I am sorry to hear that. Chronic pain is debilitating. I have fibromyalgia, and arthritis. I also have a lower back situation, and I am in pain every day of my life. Having neuropathy doesn’t help, either. Maybe that’s part of the problem I’m having. Unless other people have the same issue, they do not understand, nor do they have any empathy. If you look OK, no one wants to hear about your problems, even if they ask how you’re doing. It’s frustrating and very isolating. However, I have learned to keep things to myself, because of the lack of understanding on the part of others.

[Bassetmommer NKF Ambassador in reply to CuriousCKD]

Ah so the plot thickens here. Arthritis and many of the meds for arthritis will make you tired. I have Psoriatic Arthritis. I am on Remicade. When it is getting close to redo the infusion, I have much less energy and I feel like I am filled with silly putty, slowing me down. Also neuropathy will make you fatigue but many of the meds for it certainly will, like Gabapentin. One thing you did not mention was whether you were short of breath as well. The is an indicator of low iron stores and issues with your blood. You said you your red blood count was down I found this :

A low RBC count, also known as anemia, can affect the body's ability to transport oxygen and nutrients around the cardiovascular system. It can cause fatigue, dizziness, and heart palpitations. The most common form of anemia is iron deficiency anemia. This can result from blood loss, malnutrition, or kidney problems. medicalnewstoday.com/articl...

[CuriousCKD in reply to Bassetmommer]

I am currently not on any meds for my arthritis. I tried Gabapentin for my neuropathy, but couldn’t tolerate it. When I take walks, I don’t notice any shortness of breath. I may have mentioned before that I’ve been anemic all my life, and have rarely ever had a normal iron store count. I’ve been to two blood specialists, all kinds of lab work, and even had a bone marrow test, but nothing specific ever turned up. I know I’ve suffered from severe depression the past few years….

[CuriousCKD in reply to Bassetmommer]

I did a little more research on RBC, after I re-read your last reply. I went back to my last lab report. My RBC is at 3.9, which is too low. I will be asking my doctor to further explore this. I know there are treatments that can be done, if additional testing concludes that I am not producing erythropoietin

[crackers2 in reply to CuriousCKD]

I hear you about back pain and moving around to get things done. Energy like most of ,is not high. I have a therapist for anxiety, I can talk to her about this fatique but no one else, they just don't want to hear it and I understand.My good wishes to you.

[CuriousCKD in reply to crackers2]

Thank you, and I’m sending blessings to you!

[CKD2-4]

Hi. My nephrologist put me on Ferrous Gluconate tabs which helped with my RBC and brought me back to slightly above the normal range. I also make sure to eat some iron rich vegetables each day- like spinach, sweet potatoes, peas, broccoli, string beans- to name a few. This has definitely helped- my potassium level is fine .

[CuriousCKD in reply to CKD2-4]

Hi! Is ferrous gluconate the same thing as regular iron pills? I became really sick when taking iron pills for a couple of months last year. My liver panels went sky high, and my digestive system just about shut down. My potassium levels have gone a touch over normal a couple of times, but I’m usually within normal range. I don’t digest spinach well, but I love it, plus all the ther veggies you mentioned. I’ve been cautious about eating them, out of concern for raising my levels again.

[CKD2-4 in reply to CuriousCKD]

I’m not sure if they are similar to the other iron supplements you took. Maybe the pharmacist where you get your other medications from could answer that- i wish you well on your journey as it sounds like you have been dealing with a lot!

[CuriousCKD in reply to CKD2-4]

Thank you so much. As much as I’m dealing with, I know there are others who are going through much worse. I feel for each and every person who struggles with this stuff on a daily basis. Asking my pharmacist about the FG is a great suggestion. I will do it! 🤗

[RhenDutchess123]

Have you been put on any new meds ?...Your symptoms sound like me when they put me on a Beta Blocker...it was all I could do to lift my arms

[CuriousCKD in reply to RhenDutchess123]

I have been on carvedilol only since I had my aortic valve replaced in 2019. I didn’t start feeling so tired until sometime closer to 2021. Since my left ventricle is enlarged, I’ve been told that this is the med I need. Thanks for your input. I really appreciate your time.

[Bassetmommer NKF Ambassador in reply to CuriousCKD]

okay here is another piece to the puzzle.... Carvedilol is the most insomnia inducing BP med out there. Talk to you doc about getting on something else. I too was on it and was the most depressed I have ever been and I did not sleep more than a few hours of awful nighmare sleep. Wen off of that on to another BP that blew me up like a balloon. I could not even walk, I was so short of breath and had no energy. Went off of it and now I not only lost 15 pounds, but have more energy and no SOB. Funny thing, I am on less medication for BP than I have ever been on in my life and have the best BP. 130/62...

When you do not sleep, you will be very fatigued, and you are stressing all of your body.

[CuriousCKD in reply to Bassetmommer]

Sounds like you’ve made good progress. It’s weird how going off one med can make such a difference! Good on you! I was on three BP medications, but now down to just the carvedilol. My BP’s are still too low, I think. However, I have recently lost about 45 pounds, so that’s one reason I’m down to one med. I am tracking my daily BP’s, because I’m still getting dizzy when I stand up, start to walk, etc. some of my readings are 95/ 58, so at the end of a month, I’ll take the tracking sheet into my Cardiologist, and ask how I’m doing, and ask nif I need to go down another dose. I will also ask about an alternative drug. Thanks!

[Gutfeelings]

Hi,

I'm sorry you feel like this. My mum has stage 4 and has renal anaemia, she has been feeling totally exhausted for some time. She had an iron infusion at the end of June which has helped her and her appetite also picked up.

We had a call last week to say her renal anaemia requires epo injections so she had the first one and I will give them at home she is starting with 2 a week then blood test in 2weeks.

My mum also has a lot of other health conditions that cause fatigue and I do too I have chronic anaemia due to crohns and require iron infusions also, they do help you feel less weak and fatigued. It may be worth asking your doctor to do a review to check your bloods.

We both understand how awful it feels and are sending our wishes that you will soon feel better.

Take care x

[CuriousCKD in reply to Gutfeelings]

God bless you both! I’m in total empathy with you and you Mum. It makes life really difficult, I know. Currently, I have complete bloodwork done every three months, so I can monitor everything. Thank you for caring and for your good wishes. I’m sending my own best wishes right back to the both of you! 🥰

[CuriousCKD]

OMGsh, if I took 3 iron pills a day, I’d be a plugged nickel! I have been anemic all my life. Iron pills make me sick. I also have problematic sleep issues. I don’t get much sleep, which contributes to my fatigue, I’m sure. If I had to work, I’d be in trouble. I’m sorry you can’t get more sleep time during the week. Thank you!

[jodaer]

There are so many things out there that can cause or add to our fatigue. I'm going to toss out another idea. Our organs are working overtime to get their job done. Just like how we used to get so tired when having to work overtime at the job or even as parents and just living life. When you think about it, it makes sense. Just a thought

[CuriousCKD in reply to jodaer]

It’s true. Maybe I’m just in denial that my fatigue is due to being almost 77. It’s difficult, because I friends and family around my age that are going full-bore, traveling, doing the home chores, enjoying life. I think I’m comparing myself to them, and think I should be on par with them. Thanks for thought. I appreciate it!

[Monkipatch in reply to CuriousCKD]

Hi Curious, My GFR runs between 19-22. My fatigue is much like yours, especially when I start bending over and trying to sort and clean. You mentioned you have neuropathy. I have had Peripheral Neuropathy since 2009. I am not diabetic and never have been. Quite by accident when testing for another issue I have and by doing a Tilt Table Test they discovered I also have Autonomic Neuropathy. I started having swelling in my stomach in Jan. of this yr. , Blood pressure issues, etc. Sonagram and CT scan w/o contrast done. One Dr. said it was my imagination.. It obviously was not. But thankfully when testing for my multiple Syncope episodes, the other Neuropathy was discovered and answered so many of my other symptoms. You truly have my heartfelt empathy. We are now at the age, (I'm 73) and many times, with most Drs, you feel like cattle thru a chute. It's like they feel their time is wasted on the elderly. I do have about 3 great Drs who really care, and that helps a lot. I so hope you have some Drs who really care as well. Whatever is causing your extreme fatigue I hope it can be discovered. Blessings and hugs to you, as we all can honestly use them.

[CuriousCKD in reply to Monkipatch]

Neuropathy is the pits! I’m happy you’re getting some answers, and I appreciate your time.

[HSV21]

I can empathize with you. You say your BP is ok, but how is your pulse? My BP was fine but I felt like I would collapse every time I walked, even from my car to the store front door. This went on for over a year, when my kidneys were in Stage 3. I could sit, just not walk very far. Dr. did EKG and my pulse was down to 35. I had an electrical blockage. They put in a pacemaker and that did the trick. My nephro took me down on BP med and cut out most of my drugs /supplements as he thought it was doing the damage to my kidneys. We will see how labs are in Oct. I too have had peripheral neuropathy (from diabetes) for 20 years. Lyrica made me gain a huge amount of weight so quit it. The only thing I have found that takes some of the pain away is a Butrans patch, which is an opioid drug. But even that doesn't stop all the pain in my feet. My prayers go out for you.

[CuriousCKD in reply to HSV21]

Actually, I have noticed that sometimes my pulse is in the 80’s, while my BP was lower. I wondered a little, but it isn’t consistent. I’ll check with cardio next visit. Neuropathy can cause so many unpleasant side effects. I have complete empathy, because I suffer from it as well. I haven’t heard of the Butrans patch. I’ll have to check it out. I really appreciate your input. Thank you for the prayers. I will be praying for you as well.

[CuriousCKD]

I hope you continue to manage OK. It can’t be easy….