Hello fellow CKD people- I was hoping to get the opinions of others suffering from CKD, and their experiences. I know that we’re all different, but I would like to know others experiences. I am at stage 3b, egfr of 36. I have been around 36 for close to three years now. I have talked to my nephrologist about the fact that I’m fatigued most of the time, and my muscles/body ache most of the time, sort of like I feel when coming down with the flu. My nephrologist doesn’t think that I should be feeling like this at my stage, and that those symptoms usually don’t present themselves until later stages. She also feels that my symptoms are caused by something else, like sleep apnea. My question to the collective brain is, does anyone else at my stage feel the same way from ckd? I have done other testing to rule out other issues, i.e. neurology and rheumatology, and everything so far is fine. I would love to hear others experiences at this stage with fatigue and muscle/body pain. Any info from the group is greatly appreciated. TIA.
Wondering about fatigue/body aches - Kidney Disease
Wondering about fatigue/body aches
i have fatigue and muscle aches all the time but im on four different bp meds as well as others so i think its a combination of both on my part
it could be Vitamind D, B12, or thyroid as well. I know I didn’t feel tired when I was at stage 3b.
possible.im on vit d meds but im gonna check on the b12
Hi, how much is your last blood red cells hemoglobin?
No clue. Not sure if that has ever been checked.
I think it is different for everyone. I am on hemodialysis and feel lousy all the time. I remember shortly before needing dialysis experiencing the symptoms you described. The doctor’s don’t know everything and they are not in our bodies !! My nephrologist is always telling me I shouldn’t be experiencing something when other’s are going through the same thing.
when I was in stage three I had no symptoms did not feel tired at all still loads of energy. Look at differnt medicines you are on some of them may be causing it. What is your kidney dissent from is it from diabetes that could make you fatigue . I hope they figure it out for you soon.🙏🙏
The only medicine I take is Lisinopril 10mg 2/day. I’m pretty sure that it’s not from any medication issues, but thanks for your suggestion.
I also had Dr's telling me I shouldn't feel this bad. Besides just the different ways CKD affects different people, I also think that the different diseases of CKD affect how you feel at different stages. I was very frustrating to feel so sick, but not have any real options for improving how I felt. I have recently received a kidney transplant and I feel so much better. Even symptoms that my nephrologist said were not related to CKD are gone.
I would persue finding another cause for your fatigue. I am stage 4-5 and I do not even now have symptoms. At stage 3b, I certainly did not and that can be an issue. That is one reason why CKD goes undiagnosed until late.
Check your blood levels for VIT D, B 12 and hemoglobin. You might be anemic, and a simple blood test can discover the cause.
Hi Whitetail, you didn't say what your age is but I'm 3b too and 79. Egfr varies from high 30s to low 40s. I am also fatigued and suffer many aches and pains. First you have to distinguish your fatigue from lack of energy but not sleepy tired or just plain tired from lack of sleep. If it's the latter, then it might be sleep apnea. If the former, then there is another reason. First thing I would do is go to drugs.com and check all your meds for side effects of fatigue/tiredness/pain/aches. Those are common side effects of a lot of meds, especially statins and BP meds. Also, I just found out, Metformin.
Sometimes we just have to learn to live with the side effects of meds. What I do is plan my day/week. I can only do 1 or 2 things a day. I can only be active 2 days in a row. If I overdo it might take days to get back to my normal. Good luck.
Your situation sounds very similar. I’m 56, and only take Lisinopril for BP 10mg 2x day. I had a basic sleep study done, where my level dropped to 84.6% at one point, and they suggested not sleeping on my back (which I don’t). They ordered me a CPAP machine, which I’ve been waiting for for months now, as the machines were recalled (which doesn’t give me a lot of faith.). I used to be very active, without issues with energy/pain, but like you said, lately I can’t do very physical things, or it takes days to recover to ‘normal’. From what I’m reading on here, it sounds like more people than not, experience what I’m experiencing at stage 3b.
It's hard to say what causes what anymore. Have you tried massage for the aches and pains? I used to get them monthly before the pandemic but haven't gotten back to them since. I can tell the difference.
Currently stage 4, but have had a terrible time with exhaustion and body aches for the last year. Kidney docs blame it on all the medication I have to take since liver transplant in 2016. Clearly not true since the problems didn't start until after my kidneys began failing. I am 57. I certainly feel your pain but have also found any relief.Walking a couple times a day does help the stiffness in my achy body.
I was convinced I didn't have sleep apnea. I didn't wake up during the night. I had a sleep study and was shocked to learn I had severe sleep apnea. I was never getting into deep sleep. I didn't think I was waking up because I didn't remember it. I was. I also learned I had restless leg syndrome. I love my CPAP!
Lucky you. I couldn't tolerate the cpap. I was way more tired using it than not. But my SA was mild. it's probably worse now but i'm rarely sleepy during the day.
When was this? The modern machines are very quiet. My mask is very minimal and the tube connection is at the top of my head.
Just a couple of years ago. It wasn't the noise, I can't sleep on my back, I've tried for years to do that but just can't. The best sleep position for me wasn't compatible with the cpap.
I feel that I will be in the same boat as you with the whole CPAP thing. I am a staunch stomach sleeper, and cannot sleep on my back. Plus, my sleep apnea was diagnosed as ’mild’, so I have a feeling that’s not my issue.
I also was convinced that I did not have sleep apnea but did the sleep study so we could rule it out and move on to find out what was going on. How could I have sleep apnea when I was never sleepy during the day and slept for 9 to 10 hours every night? Boy was I surprised when it came back that I had very severe sleep apnea! The use of a CPAP was a whole new world for me. That was almost 20 years ago. Then about 15 years ago, the fatigue and body aches were back. My PCP did testing and discovered that my Vitamin D level was in the single digits. When my oldest daughter was in high school she was complaining about being tired all the time. I chalked it up to her not going to bed until 3am and had messaged the doc to talk to her about good sleep habits. Turns out that she had low iron levels, Basically this is a lot of words to say that there are many causes for fatigue and body aches.
Try the sleep study, I'm constantly amazed at how many people need to use a CPAP. Currently my husband falls asleep as soon as his tush hits the sofa. His doc just ordered a sleep study, I think we will have dueling CPAPs soon. The poor cat won't know who's machine to turn off and hose to chew on.
I will have my nephrologist do some blood work asap, and check my levels again. All my levels were in the normal range, except my creatinine 2.09, anion gap 5, and my BUN at 31. The Anion gap test is just under the low range of 6, and from my understanding, that can cause alkalosis. My vitamin D levels are fine. I did the at home sleep study, and it showed ‘mild’ sleep apnea, where my level dropped to 84.6% at one point. I will see if I can get the more intense sleep study done at the clinic to be more thorough.
It sounds like they are going to get you set up with a CPAP and I'd wait to see if that helps with the fatigue. That recall put a huge strain on the company as it was literally millions of machines (including mine) that needed to be replaced. Hopefully soon they will have one for you.
I had a sleep study done at home, and the results were ‘slight sleep apnea’. I’m waiting for my machine to arrive, which I guess they are way behind due to the machines being recalled. Thanks for your answer, as I’m ‘sure it’s not sleep apnea’, but maybe I’m wrong.
I hope I don't get beat up for what I'm going to say, but I think some of these sleep studies are scams. I do not know anyone who had one that did not show that they had sleep apnea and needed a CPAP. And, I think there are thousands of people who bought the CPAPs who now have them in a bedroom drawer somewhere. Its worrisome because I'm sure there are some people who truly need this device and may not get it. I do believe it is very useful and a lifesaver, but its recommended too often without good lab data.
My sleep study was done at a sleep study clinic tied to my doctor's office. It is highly reputable. Very scientific results. I had electrodes glued all over my body. I had to spend the night there. They woke me in the middle of the night to put a CPAP on me and get data with the CPAP. I had to meet with a specialist to get my results. Then I met with a different specialist to get fitted for the machine.
I agree with both Barbara and Drmind. I think there are some out there that just sell the machines. I also had a legitimate study, wires all over, etc. The key is to make sure you are using a reputable firm
How does one find a reputable firm? Its always questionable when medical results are tied into a financial product and most if not all physicians would shy away from this. How would we feel if our nephologists said we needed to buy their diet plan because he/she found our sodium and potassium were too high. I see it as a problem with the sleep clinic setups and not necessarily about the need for a CPAP machine.
We won’t beat you up, at least not too seriously 
When I did my sleep study I came in at 7 events per night. As I remember, the trigger point is typically at least nine events per night. Because I was bouncing between Stage 4 and Stage 5 CKD and only had one kidney, they opted to put me on a CPAP to try and give my body some margin.
I don’t know that it has made a huge difference in how I sleep. The one benefit I have experienced is I never snore at night anymore, which my wife loves. Absent that, my wife, who struggles with getting enough/restful sleep, would have likely exiled me to the spare bedroom.
We are both in our late 50s.
Thanks for not beating me up too badly. I do believe that there are legitimate tests, but I also believe that there are a lot of clinics that just sell CPAPs. It would be more ethical if the sleep clinics did not sell a product and was not connected to companies that sold machines. this would then assure that they could not benefit financially from any test results they obtained.
The sleep clinic I went to didn't sell cpaps. I wouldn't buy one anyway. I went back to my pulmo, he prescribed it and Medicare paid for it. It didn't cost me a dime. I went to a DME company.
never felt that way when I was stage 3. I am stage 5 and sometimes feel like that now, but not always. I have been stage 5 since 2018. I am on minimal meds right now and feel pretty good. Occasional leg cramps and tendonitis, that's about it.
You could have Fibromyliga.
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